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This posting marks the initial gathering of a virtual community of individuals who recognize that each of us must participate knowledgeably and actively in finding and using health care if we are to benefit from it.
As the first blogger on this site, I write first as a person who has been diagnosed with three different types of cancer and a serious heart condition -- and as one who manages the long-term effects of that many diagnoses and that much treatment on a daily basis.
We can be excused for thinking that our doctors have a computer program that allows them to track our health history and forward relevant record to a specialist to whom they are referring us. After all, when I walk in to my provider's office, the receptionist is sitting in front of a computer; plus my doctor makes use of other computerized devices for measuring my temperature, blood pressure, weight and heart rhythms.
In the past two weeks I have visited two college campuses---one in Brooklyn and one in Wisconsin.' Large numbers of students turned out to hear about the new reform law and wanted to know what it meant for them.'
Yesterday, our Health Headlines included a study mentioned in the Washington Post that revealed that we are more comfortable and satisfied with our communications with our clinicians when they sit down to talk with us. This study surveyed patients while in a hospital but surely this is true in office visit settings too.
Do you have your prescriptions filled through a mail-order pharmacy? You are not alone.
I recently asked my dad if he ever reads the health section of the newspaper. He said "Nope, never. That's for people who are sick."
Throughout the long debate over health reform, the president told us if we liked the insurance we had, we could keep it.' No government would come between us and our health coverage!'
2009 was not a good year for the public's understanding of evidence.
Tuesday's New York Times ran a story about the unreliability of the tests and the variation among laboratory standards that determine the potential effectiveness of new targeted cancer treatments. Linda Griffin, a physician with breast cancer, described the series of treatment decisions she made with her doctors about whether or not to take the very expensive, fairly disruptive and potentially very effective drug, Herceptin, based on a genetic test that was inconclusive and further, which produced different findings when the same material was retested.
Over the years, I've filled out plenty of forms at doctors' offices, but this was a new one for me.
Your mother is in the hospital. The nurse comes in to give her a drug. You ask what drug it is and it's something to which she's allergic a fact noted on the long list of things you had to provide at admission. The nurse apologizes profusely and gets a substitute drug for her. The next day about the same time, a different nurse comes in to give your mother a drug. Again, you ask and again it is the wrong drug.
In May 2009, my 61 year old mother, who lives in Maine, was diagnosed with Stage 3 Breast Cancer. My proud mother worked hard every day of her life as a cleaning person to provide me the best education, often bartering with clients so that she could provide dental or eye care or other services for me while I was growing up.
Apparently, borrowers who obtained a home loan in the last five years spent five hours researching a mortgage, half the amount of time they spent researching a car and the same amount of time they spent researching a vacation, according to a study reported in The New York Times on Saturday.
The Center for Advancing Health, just released A Snapshot of People's Engagement in Their Health Care
, a study that found that most of us do relatively little to participate in our health care.
The new health reform law is what I like to call an 'over-the-line proposition' because undoubtedly, someone is going to be left out. ' What passed the Congress will not bring universal health coverage to America; nor does it assure that everyone is entitled to health care as a matter of right.' It simply adds more people to the current system by giving them subsidies to buy insurance they couldn't otherwise afford.' In such a system, there will always be people over the line'they won't qualify for this subsidy or that program either because the government limits its spending on them, or it wants to encourage people to use private insurance to keep those markets strong.
Most of us like it when our health care decisions are simple and straightforward -- when the potential benefit of one option far outweighs the benefits and risks of the other. Should I smoke? No. Should I get a mammogram? Yes. However, advances in screening, preventive measures, diagnostic technologies and treatments have rendered our preference for the certainty of the simple choice obsolete.
One of the behaviors necessary to be a prepared patient is to seek and use the appropriate health care setting when professional attention is required.
For thousands of laid-off Americans who have been relying on COBRA for their health insurance the past several months, Friday brought some bad news. In an effort to trim the deficit, the House voted to drop an extension of COBRA benefits that would have given displaced workers coverage until the end of the year. That would have cost the government nearly $8 billion. The Senate will vote on the issue next week.
The National Health Service in the UK has rolled out its campaign to inform the public that an individual's online summary care record will soon be readily available to any health care worker. At that point, people will be able to view their summary, schedule hospital appointments and make use of health information and links to help them manage their health and lifestyle by keeping track of information like your weight, blood pressure, cholesterol levels and medications.
Do consumers buy health insurance like they buy canned peas? Or should they? That's the big question market place advocates have been trying to answer now for more than a decade. The government and others have thrown gobs of money at this vexing problem trying to figure out the best combination of stars, bars and other symbols that will catch the shopper's eye.
From WHIO, a news talk radio station in Dayton, Ohio, comes word that four area hospitals rank in the top five percent nationally for emergency care. That is impressive, I guess. If you have an emergency, your chances of having a good outcome in one of them are probably pretty high. At least that's a reasonable assumption. The story went on to say that HealthGrades, the outfit that gives the awards, evaluates the hospitals based on their mortality rates for 11 of the most common conditions for patients needing emergency treatment. Furthermore, only 255 of the 4,900 acute care hospitals in the country got the award. A viewer might be doubly impressed.
I was home relaxing when I received a call from Uncle Johnny. When I saw on the Caller-ID that it was him, I braced myself. Calls with my Uncle Johnny were never brief, by nature he was loud so I had to yell too, and his conversations always involved more than a few swear words. My uncle has been described as a gun not a pistol, but a gun!
A recent article in MedPage Today reported that most physicians have a favorable view about gifts from pharmaceutical and medical technology companies. What do we, as patients or potential patients, think about that?
When the Centers for Medicare and Medicaid Services (CMS) took the rare step this spring of kicking Fox Insurance out of the Medicare Part D drug benefit program, it pretty much went unnoticed. CMS went after Fox, admittedly small fry in the pool of insurers, and said they couldn't sell any more stand-alone prescription drug plans to seniors These plans are the kind that people buy to complement Medigap policies that don't offer any drug coverage.
In a recent iHealthBeat post, Steve Findlay talks about a provision in the new meaningful use rules for health information technology issued by DHSS. Findlay noted that nothing seems to have moved the needle on people completing advance directives. He expressed hope that this can now be rectified if hospitals embrace the optional (menu set) meaningful use objective that promotes recording the existence of an advance directive in a person's EHR. It's a start.
Once upon a time, most people traveling outside the US depended on a travel agent and some were only comfortable when they were part of an organized tour. Finding top hotels or out of the way adventures was best left to experts. Travel guides available at bookstores, though often outdated, were gripped in sweaty hands, consulted like Bibles.
Picture a pumpkin and a pumpkin pie. A pumpkin is a vegetable; a pumpkin pie is a meaningful use of that vegetable.
The Robert Wood Johnson-funded Project HealthDesign primer on Personal Health Records (PHRs) describes the new PHR both as a repository for information related to one's health care and a way to record observations about daily living (ODLs). We're meant to track these observations the amount and quality of our sleep; what we ate; our blood pressure; our symptoms in the belief that such information will shape daily decisions and allow for a more productive discussion with (our) clinician.
A young friend showed me her Explanation of Benefits from Empire Blue Cross Blue Shield. "I don't really understand it," she said. This woman has a master's degree from the London School of Economics but couldn't comprehend what her insurance carrier was telling her...
Rick Hamlin, in an op-ed essay last week, recounted how his surgeon assured him that he would be able to go on a family vacation to Spain three weeks after his open-heart surgery. In the New York Times
piece, Rick described his disappointment and despair at the unexpected six months of fatigue, pain and depression that constituted his recovery.
Ask us if we are more likely to use a medication as directed if our doctors explain why a specific drug might be helpful, how to take it so that it is most effective and what its possible side effects are and then discuss whether we think we are willing and able to take it.
Delivering evidence-based medicine is a deceptively elegant and simple goal.' But new findings about the increase in antibiotic resistance challenge us to consider just how complicated and challenging it is to actually define and deliver evidence-based care.'
Problems with evidence-based guidelines and comparative effectiveness research all have at their core the conflict between averages and individuals.
Dianne Cooper Bridges, a feisty health reform activist in Massachusetts, recently found herself in the hospital for a routine consultation with no tests or procedures. Because Bridges, a self-employed designer, refuses to buy the required health insurance in her state, she has no insurance and occasionally pays a fine. That means she shops carefully for medical care, which she pays for in cash. When she called the University of Massachusetts Memorial Medical Center and asked how much her consultation would be, the hospital quoted her a price between $100 and $200.
Exploring these questions is relevant to all who are working to support people's engagement in their health and health care. They are also relevant to the debate about the value of comparative effectiveness research. Science journalist Chris Mooney reports a couple of provocative points in this account of four meetings on the topic sponsored by the American Academy of Arts and Sciences over the past year.
The old joke about psychological therapists is they are among the biggest consumers of therapy themselves. Lately, I have been noticing more and more how a significant portion of the people we meet wearing white lab coats have a very personal connection to the medical work they do. For them it is not a job, a meal ticket, or just putting their years of training into practice, it is a mission connected to something in their past, something in their own body, or the health of a loved one.
I've been spending time lately becoming more familiar with methods of public participation and the evidence behind participation. When I first moved to British Columbia, the government was sponsoring 'Conversations on Health' which I initially found exciting and innovative. That effort was designed to give the public a voice about health care in the province. I sent in my comments via the website and read about the public meetings being held throughout the province. I became a skeptic when I compared the data and original reports from the conversations and the conclusions. They didn't seem to match.
Maggie Fox, Health and Science Editor at Reuters, is reporting that a recent study suggests that Americans die sooner than citizens of a dozen other developed nations and the usual suspects ' obesity, traffic accidents and a high murder rate ' are not to blame. Instead, poor health care may be the cause.
In his most recent blog, "How to Pick Good Health Insurance - Your Life Depends on It," Dr. Davis Liu emphasizes how important is it for us to evaluate carefully our health insurance plans. Liu points out that, unlike other companies or products whose efficacy may impact our lives modestly ' your car wash, dry cleaners and choice of movie theater ' the ranking of your health insurance plan relative to others impacts your life greatly. And not all health plans are created equal.
There's an extraordinary new article in The Atlantic, 'Lies, Damned Lies, and Medical Science.' It echoes the excellent article in our Journal of Participatory Medicine (JoPM) one year ago this week, by Richard W. Smith, 25 year editor of the British Medical Journal: In Search Of an Optimal Peer Review System.
On October 11, 2010, Baltimore Sun reporter Meredith Cohn reported that some U.S. health care providers are experimenting with trying to reach patients through social media and reaping big rewards. Providers are not just using Twitter and Facebook but trying new social media tools like Groupon, Foursquare, Scoutmob and LivingSocial that all blend social media with market forces to bring customers value and create new revenue for entrepreneurs, business owners and now health care providers.
A colleague of mine, Cheryl, has been trying to help a solo physician address a thorny issue. Through the use of 'How's Your Health', an amazing Web-based suite of health and practice tools, the physician realized that many of her patients struggled with maintaining an adequate income. Cheryl went looking for some ideas for the physician, and she came across this: Health Providers Against Poverty, an Ontario-based group that has a toolkit to help primary care professionals address poverty issues.
Some broad questions about how bad it is to be big are raised by the government's new antitrust suit against Blue Cross Blue Shield of Michigan, which allegedly used its market dominance to force hospitals to charge other insurers a third more than the insurance giant paid. One can see how this could help the nonprofit Blues control the market, but it is difficult to determine how this was in the public interest ' or even advantageous to those it was covering.
Well, what do you know? Another study surfaced this week raising more questions about the usefulness of the information on the federal government's Hospital Compare web site, just at a time when most of us are thinking about choosing new health plans for next year. For some time now, the standard advice has been to look at all available data for the doctors and hospitals in the plans you are considering. That has meant heading to the Medicare Web site and its Hospital Compare data set.
The October 19 edition of iHealthBeat is reporting that National Coordinator for Health IT David Blumenthal and HHS Deputy Assistant Secretary for Minority Health Garth Graham have asked health IT vendors for their help in preventing a "digital divide" involving health care providers who serve minority communities. Blumenthal and Graham called on these vendors to make sure they target such health care providers in their marketing and sales campaigns.
This week's collection of patient perspectives includes Patient Power's Andrew Schorr, Leighann Calentine of D-Mom Blog, e-Patient Dave, and RA Warrior Kelly Young.
The increasing presence (sometime hidden) of advertisers in health care websites - including the new Sharecare - was discussed this week by healthcare journalists Gary Schwitzer and Pia Christensen, Dr. Elaine Schattner, M.D. and marketer and advertiser Dan Dunlop
Federal and state government officials and their opponents in the insurance industry have been busy as beavers these days chewing on that perennially vexing problem: how to disclose insurance information so consumers will be wise shoppers. Since we have a market-based model of health insurance, that's not a frivolous question. What works best, what doesn't, and what do consumers acting as shoppers really care about?
You have to get out of this hospital it's a dangerous place, each of my physician friends exclaimed when they came to visit me during my recent stay after surgery for stomach cancer.
Three times a day, as though responding to some signal audible only to the generously medicated, we rise from our beds to join the slow procession around the perimeter of the unit. Like slumped, disheveled royalty, each of us blearily leads our retinue of anxious loved ones who push our IV poles, bear sweaters to ward off the harsh air conditioning and hover to prevent stumbles. Some make eye contact. Few talk. Each of us is absorbed in our suffering and our longing to return to our bed.
By the time I reached the sixth day of my hospitalization for stomach cancer surgery, I was antsy to go home and I quizzed each nurse and physician who came into my room about what must happen for me to be liberated the following day. Their responses were consistent: my surgeon would visit in the morning and write orders for my release. Then I would have a comprehensive discussion with my nurse about my discharge plan, after which I could leave.
As Gale Fisher approached her late 60's, she remained active - playing golf and walking, but pain in her right calf made walking difficult, and it was getting worse. Gale eventually saw her doctor who suggested fusion surgery. Gale sought a second opinion from a vascular surgeon. He proposed a major surgery that would require 10 days in the hospital to open the blood flow. Gale sought out third opinion. The information she received changed her life.
Much is made of what to call those of us actively engaged in pursuing and receiving medical care from health professionals, and this post does not intend to settle that issue. But I've discerned a shift towards using "consumers" as the catch-all term to describe people who actually have different experiences, needs, views, and behaviors within the health care system. Although often used interchangeably, I believe there are distinctive differences between consumers, patients, and patient warriors in the context of health care.
A collection of patient voices from around the web. This week's roundup includes: Dana Jennings of the New York Times, RA Warrior Kelly Young, Leighann Calentine from D-Mom Blog: the Sweet Life with a Diabetic Child, and the Patient Empowerment Blog's Trisha Torrey.
Would you keep using a doctor who collected $300,000 or even $300 in speaking fees from drug companies for saying a good word about their products? That's the question the non-profit, investigative journalism outfit ProPublica is inviting thousands of patients to ponder.
A collection of professional voices from around the web including Dr. Herbert Mathewson in The Health Care Blog, Dr. Kevin Pho of KevinMD.com, and Dr. Rob Lamberts on his blog, Musings of a Distractible Mind. These highlight the patient experience from a professional perspective and the power of touch.
We advocate science-based medicine (SBM) on the Science-Based Medicine blog. However, from time to time, I feel it necessary to point out that science-based medicine is not the same thing as turning medicine into a science. Rather, we argue that what we do as clinicians should be based in science. This is not a distinction without a difference. If we were practicing pure science, we would be theoretically able to create algorithms and flowcharts telling us how to care for patients with any given condition, and we would never deviate from them.
There is tremendous intuitive appeal in the idea that people must be engaged in their health care to benefit from it. To date, however, there has been little direct evidence to support the claim that our engagement affects health outcomes.
Long gone are the days when all nurses sported identical uniforms and only physicians wore white coats and scrubs. Today, when visiting your doctor's office, it can be difficult to know with whom you're speaking and what role they play in your health care.
Chris Gibbons, MD, CFAH Board Member, interviewed by CNN on using social media and web coupons for health care.
When I was in high school, the singer Kitty Kallen had a #1 hit - "Little Things Mean a Lot." The ballad is decidedly uncool by current standards, but as a teen-ager I liked its romantic dreaminess. The song popped into my mind as I was musing about the after visit summary I was given at the end of an appointment with my primary care physician yesterday.
The decision by Metropolitan Life to stop selling long-term care (LTC) insurance once again calls into question the viability of that product as a way to pay for nursing home, assisted living and home care needed by the growing number of elders. MetLife was a solid company'big and reputable, with a knack for selling policies to workers whose employers offered the coverage as an extra benefit. It was a name that people trusted in an industry characterized by many small sellers, some of whom became insolvent.
KevinMD hosts a range of clinicians who comment on the electronic medical record. Guests include: Dr. Christopher Johnson, pediatric intensive care doc, who blogs on ChristopherJohnsonMD; Jared Sinclair R.N., an ICU nurse and pre-medical student, who blogs at jaredsinclair + com; and Angienadia M.D., a Yale intern, who blogs at Primary DX. Read what they have to say about EMRs.
I've been following evidence-based medicine for many years and I've been appalled by the way it is playing out. We have pay-for-performance that does not understand that the reliability we are after is not in reliably (read blindly) applying a guideline to a patient population, but rather reliably considering how the evidence applies to the individual in a health care interaction. We have guidelines that are based on expert opinion, often influenced by drug company funding, or based on bad science. And we have a news media that seems unable to present medical findings in a balanced and understandable way.
Increasingly, you are finding real patients who have the conditions discussed at conventions, in scientific sessions, and around exhibit halls. Patients like me want to be where that news breaks; we want to ask questions and thanks to the Internet we have a direct line to thousands of other patients waiting to know what new developments mean for them. PR types and social networking media analysts take note: we are a new force to contend with.
Doctors, lawyers, researchers, and hospital CEOs all have something to say these days about Accountable Care Organizations (ACOs). A collection of web posts includes: Frank Pasquale with Concurring Opinions, Anna D. Sinaiko and Meredith B. Rosenthal in The New England Journal of Medicine's November Perspectives, Vince Kuratis on The Health Care Blog, Jim Sabin on KevinMD, and Paul Levy on Running a Hospital.
Gary Switzer's post on the Health News Review blog reminds us once again of potential conflicts between physician/pharma and consumer interests.
Media coverage of the government's new investment in comparative effectiveness research leans heavily toward the effects of such research on new drugs and technologies: Will such evaluations lead to restricted access to the latest innovations? Will insurance no longer cover a drug that might give my aunt another year to live? Will such research hinder the development of a drug that could cure my nephew of type 1 diabetes?
My friend Ariane Canas, a New York City hairdresser, was eager to tell me about a new health insurance policy she had come across. It was cheap very cheap as such coverage goes. I knew that she and her husband, who is also self-employed, had gotten a notice this fall from their current carrier advising of a 33 percent rate increase.
Some patients don't tell their doctors the full story about their health. Sometimes physicians aren't aware of the omission; others know the patient is withholding information. Either way, physicians are responsible for the decisions they make regarding what they know and do for these patients. Electronic health records will not change this reality.
Health care reform is a hot topic with yesterday's court ruling that a portion of the Affordable Care Act is unconstitutional.
As many of you know, this fall, Jessie Gruman, CFAH Founder and President, was diagnosed with stomach cancer, her fourth cancer-related diagnosis.' We have all been touched and gratified by good wishes for her and CFAH from around the world.
The new health reform bureaucracy at the U.S. Department of Health and Human Services has announced that it will now require employers, health insurers and union welfare benefit funds to disclose to policy holders that the health insurance they have may not be real health insurance at all. They now have to tell us if their coverage does not meet minimum benefit standards required by law and by how much they fall short. So those who have mini-med policies will now get a notice telling them that their policies cover very little. As if people don't already know.
A collection of patient voices from around the web. This week's roundup includes: Christine Miserandino & e-Patient Dave on The Spoon Theory, Amy Tenderich with gift advice, and WarmSocks on keeping an emergency supply of meds.
As Medicare's open enrollment season draws to a close, it's a good bet that seniors are still sifting through all those brochures and flyers that have come in the mail the last several weeks. My husband received 22. Here's a simple rule to make the sifting go a little faster.
Given all the obstacles that prevent us from getting to the doctor's office scheduling an appointment, digging out the insurance card and plain old procrastination it is good health sense to make the most of your time when you are finally face-to-face with your health care provider.
File folders, marching across the shelves in an orderly line behind the receptionist's desk, may be the first thing you see when you sign in for a doctor's appointment. While it's tempting to believe that your personal health history is neatly contained within one of those folders, the truth is far more troubling.
When her grandmother experienced a sudden onset of dizziness, slurred speech and facial drooping, Kafi Grigsby found herself in an emergency department waiting room, surrounded by five doctors with four different opinions on what had occurred and how to treat it.
It could be a broken wrist, or a life-altering battle with cancer, but sooner or later most patients run up against the diagnosis that sends them from their primary care doctor's care into the hands of a new physician. In medical circles, this transition is called the "handoff" a casual name that conceals the complications and risks of this journey.
Cost-cutting measures are creeping into the medicine cabinet. We split pills in half or take the drugs every other day to stretch our doses. We stop filling the prescriptions for our most expensive drugs. We buy prescriptions from online pharmacies with questionable credentials. As patients pay more for their prescription drugs ' whether it's through higher insurance co-pays or shouldering the full costs ' many people decide to opt out of taking the drugs altogether. But there are safer ways to cut costs than skimping on ' or skipping 'the medicines you need.
A recent report from the President's Council of Advisors on Science and Technology calls upon the Federal government to facilitate the widespread adoption of a universal exchange language that allows for the transfer of relevant pieces of health data while maximizing patient privacy. Despite providing some very useful and important perspectives, the report also drops the ball in a few key areas.
What's in a word? Or, even one letter of an acronym? Some people use the terms electronic medical record and electronic health record interchangeably. But here at the Office of the National Coordinator for Health Information Technology (ONC), you'll notice we use electronic health record or EHR almost exclusively.
While commuting to work in September 2009, Ashley Finley stopped her bike short to avoid a pedestrian and flew over the handlebars, hitting her head on the pavement. Her chin gushing blood and with concerns about head injury, Ashley and her partner, Goldie Pyka*, immediately headed to an ER. Though their wait time in the Washington, D.C., emergency room was minimal, Pyka says she felt surprised by the number of people who participated in Ashley's care. 'I was expecting to see one person, tell them what happened and have that person help. I wasn't expecting to interact with that many people and to not really be told who they were and what they were there for. I felt we were very passive in the whole experience,' Pyka says.
CNN's Empowered Patient also focused on emergency rooms in their January 13th article Don't Die Waiting in the ER .More articles and features in Elizabeth Cohen's Empowered Patient series can be found here.
This week's roundup features a collection of patient voices from around the web including: Winner of the reality TV show the Amazing Race, Nat Strand, RA Warrior Kelly Young, and alias blogger WarmSocks.
'How to Haggle With Your Doctor' was the title of a recent Business section column in The New York Times. This is one of many similar directives to the public in magazines, TV and Websites urging us to lower the high price of our health care by going mano a mano with our physicians about the price of tests they recommend and the drugs they prescribe. Such articles provide simple, commonsense recommendations about how to respond to the urgency many of us feel ' insured or uninsured ' to reduce our health care expenses.
Given the interest in Congresswoman Gabrielle Giffords' transfer to a Houston rehabilitation facility, here is our Prepared Patient feature article: 'Goodbye, Acute Care, Hello, Rehab' . Understanding some of the myths and realities of rehab care can help patients and caregivers during this critical transition and recovery time.
While access to health insurance is a critical component of finding good care and making the most of it, being insured is often just the starting point for frequent users of health care services.
It could happen tomorrow. The doctor says, "I'm sorry, I have bad news," and suddenly your life is turned upside-down, leaving you reeling from the shock of a potentially life-threatening diagnosis. Here is some advice on getting through that initial period.
Dr. Sloan's piece 'A Fighting Spirit Won't Save Your Life', that recently ran in The Opinion Pages of the New York Times, calls into question our belief that we can affect our health through optimism and positive thinking.
The February issue of Prevention magazine has an article, "Surprising Faces of Heart Attack" profiling "three women (who) didn't think they were at high risk. Their stories are proof that you could be in danger without even knowing it." No, their stories are not proof of that.
If prizes were given for ingenious marketing, drug companies would win top honors. Like most businesses, they want to expand markets'that means getting you to buy more drugs whether you need them or not. Their appetite for finding new ways of doing that is insatiable.
Pediatric specialist, Dr. Bryan Vartabedian MD, writes about a time when he forgot to introduce himself to a new patient and on the Patient Empowerment Blog, Trisha Torrey recognizes the problem with the lack of identification in the clinical setting, and reflects deeper on the issue of patient safety.
Through poetry, art and music, people describe and reflect on their experiences with health care. In this Def Poetry Jam video, Thea Monyee and GaKnew Rowel tell about the birth of their daughter.
As far as my chemo nurse Olga* is concerned, I can do nothing right. She scolded me for sending an e-mail when she thought I should have called and vice versa. She scolded me for going home before my next appointment was scheduled. She scolded me for asking to speak to her personally instead of whichever nurse was available. She scolded me for calling my oncologist directly. She scolded me for asking whether my clinical information and questions are shared between my oncologist and the staff of the chemo suite. I could go on'
I am so tired of this all-or-nothing discussion about science! On the one hand there is a chorus singing praises to science and calling people who are skeptical of certain ideas unscientific idiots. On the other, with equal penchant for eminence-based thinking, are the masses convinced of conspiracies and nefarious motives of science and its perpetrators. And neither will stop and listen to the other side's objections, and neither will stop the name-calling. So, is it any wonder we are not getting any closer to the common ground?
'I had a wonderful gentleman patient who had resistant blood pressure,' recalls Vicki Koenig, M.D., a retired family doctor in Exmore, VA. 'When he came for a blood pressure check on the latest new med and it was great, I was ecstatic. Then he said, 'But I notice my urine's a little dark.' His was one of the first cases of fatal liver complications from this medication.' Medication side effects are common'but when should you speak up?
This is a HUGE problem. We have a lot of unnecessary hospital emergency department (ED) use in this country. Stories like this one in which a very ill child was kept waiting dangerously long to see the doctor are a natural consequence of ED overcrowding. You can blame the healthcare workers for not recognizing the severity of her illness. You can blame your doctor for those interminable waits on the phone that cause you to not even want to pick up the phone to request a same day appointment.
Checklists are not just for rocket launches. Family doctor, Dr. Davis Liu, Rep. Giffords' trauma surgeon, Dr. Randall Friese, former hospital CEO, Dr. Paul Levy, and a fifth year medical student, Ishani Ganguli, post on the importance of using checklists to promote patient safety. A new British Medical Journal study agrees.
Shared decision making is hot right now. Research. Surveys. Tools. Training. Conferences. Policies.
The current model of shared decision making consists of providing patients with evidence that allows them to compare the risks and side effects of different treatments or preventive services when more than one option is available. After studying the evidence, the theory goes, patients discuss it with their physician, weigh their personal preferences and together the two agree upon a course of action.
Ask someone what he or she remembers Obama promising during the great health reform debates, and the response might be: 'We can keep the insurance we have.' The president did offer assurances that there would be no socialized medicine with the government dictating where you could go for care. He did not mention, though, that many insured people already have little say in what kind of coverage they get and who can treat them.
The mad scramble to figure out how to 'engage' patients in their healthcare has begun! Everyone from PR firms to hospital board members are trying to figure out how to engage patients in their health care. My question to hospitals and others is this: Why would you reject the help of thousands of individuals positioned in various ways to help you be more successful?
The thing that jumped out at me most from the Consumer Reports survey of almost 700 primary care physicians and thousands of CR subscribers - described by CR as "What doctors wish their patients knew" - was something about what patients wish their doctors knew.
It was sometime in the mid-nineties that parents started showing up in my office with reams of paper. Inkjet printouts of independently unearthed information pulled from AltaVista and Excite. Google didn't exist. In the earliest days of the web, information was occasionally leveraged by families as a type of newfound control.
iHealthbeat is reporting that, according to a PricewaterhouseCoopers Health Research Institute report, health care providers might not meet Stage 2 meaningful use rules unless they more actively engage patients about their role in the use of health IT. Although the National Coordinator for Health IT, David Blumenthal, has dubbed 2011 the beginning of the "era of Meaningful Use", it is clear that it is not clear what Meaningful Uses actually means.
In a previous post, I talked about what happens when a radiology practice goes digital for mammography, even though there's scant evidence that more-expensive digital is better than cheaper film for detecting cancer in older women. Yet the higher-priced costly procedure is winning out. That's pretty much the norm for U.S. health care, for instance, when ThinPrep replaced the conventional method for doing Pap smears. I used to pay $9 for the test; the one I had last summer cost $250.
The other day I came across this photo of a couple clasping each other in a dramatic tango on the cover of an old medical journal'a special issue from 1999 that was focused entirely on doctor-patient partnerships. The tone and subjects of the articles, letters and editorials were identical to those written today on the topic: 'it's time for the paternalism of the relationship between doctors and patients to be transformed into a partnership;' 'there are benefits to this change and dangers to maintaining the status quo;' 'some doctors and patients resist the change and some embrace it: why?'
I had a heart attack two years ago and was taken immediately to the O.R. for a stent implantation. Overwhelmed and terrified, I knew nothing of what was about to happen to me. What I learned later was that my stent may help a newly-opened artery to stay open. But a new study now suggests heart patients believe that stents have far greater benefits than they actually do. Should it be up to patients to ensure that doctor-patient communication is accurate or effective during an emotionally overwhelming medical event?
A blog round-up on the importance of building relationships with patients---starting early with medical students. Hospital administrators and specialists also weigh in with solutions.
When you've been to one clinic or hospital, you have been to one clinic or hospital. Each operates differently and expects patients to take on different roles and responsibilities, which are rarely explained.
It's all the little things that make caring for yourself or the one's you love with an illness that much more challenging. People with diabetes, MS and Rheumatoid Arthritis share their experiences in this patient blog roundup.
About 30 years ago I had my first run-in with code creep. A urologist I had visited for a garden-variety urinary tract infection billed $400 to determine that this was what I had. The price seemed excessive, and then I looked at the bill. The good doctor has 'unbundled' his services. He charged for every single thing he did'inserting a catheter, taking a urine sample, writing a prescription and finally adding a fee for a general office visit. I had thought all those things were part of the office visit. I protested. He reduced his charges, and I never went back.
In the recent Coen brothers' remake of the 1969 movie True Grit, Mattie Ross, an intrepid 14-year-old, is determined to hunt down and kill the man who murdered her father. To accomplish this, she hires U.S. Marshal Rooster Cogburn, (played by a mumbling Jeff Bridges) a rough, one-eyed veteran of many such quests ' then announces that she plans to come along. She figures she is prepared.
Fascinating, how in the same week two giants of evidence-based medicine have given such divergent views on the future of quality improvement. Donald Berwick, the CMS administrator and founder and former head of the Institute for Health Care Improvement, emphasizes the need for quality as the strategy for success in our healthcare system. But one of the fathers of EBM, Muir Gray, states that quality is so 20th century, and we need instead to shine the light on value. So, who is right?
Members of the American public are frequently surveyed about their trust in various professionals. Doctors and nurses usually wind up near the top of the list, especially when compared to lawyers, hairdressers and politicians. Trust in professionals is important to us: they possess expertise we lack but need, to solve problems ranging from the serious (illness) to the relatively trivial (appearance).
The most popular post on my blog is entitled Five Reasons Why People Do Not Ask Their Doctor Questions. Well it seems there is a sixth reason. The Reason? Patients were never supposed to ask doctors questions.
At 98 years old, Bob Stewart swears by his dietary supplements as a secret to successful aging. He takes flaxseed and apple cider vinegar pills, along with a Japanese supplement called nattokinase. He has never had a 'bad experience' or side effects, he says. But Betsy McMillan, an Ohio writer, describes her overdose from a vitamin B complex supplement. After a few weeks of taking it'in which she never exceeded the dose recommended on the bottle'her liver began to swell and she was overwhelmed by fatigue. It turned out that the pills contained potentially fatal levels of niacin.
The outsourcing of work by businesses to the cheapest available workers has received a lot of attention in recent years. It has largely escaped notice, however, that the new labor force isn't necessarily located in Southeast Asia, but is often found here at home and is virtually free. It is us, using our laptops and smart phones to perform more and more functions once carried out by knowledgeable salespeople and service reps.
Doctors and an executive vice president share experiences of over-testing and over-treatment in medicine and propose solutions to alleviate the problem by using you.
"Life gives you lemons and you make lemonade your response to all those cancer diagnoses is so positive, such a contribution!" "Your work demonstrates that illness is a great teacher." "Your illness has been a blessing in disguise." Well-meaning, thoughtful people have said things like this to me since I started writing about the experience of being seriously ill and describing what I had to do to make my health care work for me. I generally hear in such comments polite appreciation of my efforts, which is nice because I know that people often struggle to know just what to say when confronted by others' hardships.
Diana Mason, former editor-in-chief of the American Journal of Nursing, interviews Program Officer at The John A. Hartford Foundation, Amy Berman, and The New York Times blogger and nurse, Theresa Brown. Amy Berman was diagnosed with Stage IV breast cancer earlier this year, and in this interview, she says, 'Nothing was off limits.'
A new report by the Center for Disease Control and Prevention reveals that half of U.S. adults take vitamins and other dietary supplements.
Journalist Meg Heckman becomes the source when she shares her experience of living with hepatitis C. She says, The worst thing about having hep C isn't the disease or symptoms, it's the way others perceive you when they find out you have it. Watch this video, which was also featured on the Association of Health Care Journalists Covering Health blog and Stanford's Scope medical blog. Meg's six part 'My Epidemic' series was originally featured in the Concord Monitor.
There appears to be no area that social media cannot soak through to: farming, politics, dating, death and even taxes. It comes as no surprise then that social media has diffused into the world of health care. Clinicians, researchers, patients and hospital CEOs are blogging, tweeting and sending Facebook messages. This post reveals some of the recent dialogue on the web surrounding social media and its use by health care professionals.
Before we had EBM (evidence-based medicine) we had another kind of EBM: experience-based medicine. Mark Crislip has said that the three most dangerous words in medicine are 'In my experience.' I agree wholeheartedly.
It was only a small hole in the pavement in front of my building last fall. But the seasonal snow, ice and salt, a dramatic increase in traffic and the neglect of a cash-strapped local bureaucracy has produced a honking big pothole that slows a lot of people down. We face a similar figurative pothole as vital health-related activities such as appointment scheduling, interaction with providers and comparative cost and quality information migrate to the Web.
All the talk about information technology in health care was just an abstraction to me until it actually came to my town. I read about all the money the federal government was spending to spur the development of electronic medical records, but most of my records were still stored in those vast walls of color coded folders. Then my medical group introduced a new IT system that allows patients to do a lot of fantastic things online ' for FREE!
Following our most recent Prepared Patient feature article, Dr. Steve Novella of the Science Based Medicine blog and Dr. Oz on The Dr. Oz Show explore a similar issue.
Each of the four times I have received a cancer-related diagnosis, I felt like I had been drop-kicked into a foreign country: I didn't know the language, I didn't understand the culture, I didn't have a map and I desperately wanted to find my way home.Over the years I have listened to hundreds of people describe the same experience following the diagnosis of a serious illness. As the number of physicians, diagnostic test sites and treatment options have grown and the lack of seamless, coordinated care persists, the majority of patients and their loved ones struggle to find the right care and make good use of it.
Many consider medicine just as much of an art as a science. How you communicate with your clinician and how your clinician communicates with you can affect your care.
We're hosting Grand Rounds for Better Health on Tuesday, May 17th. Grand Rounds is a curated collection of top recent health care blog posts. Please submit any blog contributions for the May 17th Grand Rounds to firstname.lastname@example.org by Sunday, May 15th.
We look forward to hearing from you, and be sure to check out our collection for Grand Rounds here on the Prepared Patient Forum, What It Takes, blog on May 17th.
Only one in 10 respondents to a national survey could estimate how many calories they should consume in a day. Seventy-nine percent make few or no attempts to pay attention to the balance between the calories they consume and expend in a day.
These and other piquant findings from the online 2011 Food and Health Survey fielded by the International Food Information Council Foundation (IFIC) struck home last week as I smacked up against my own ignorance about a healthy diet and the difficulty of changing lifelong eating habits.
We received more than 40 contributions for this week's collection of health care blogs and columns. Patients, clinicians, policy wonks and interesting folks with opinions submitted original posts that are sure to expand your thinking and perspectives.
You are sick with something-or-other and your doctor writes you a prescription for a medication. She briefly tells you what it's for and how to take it. You go to the pharmacy, pick up the medication, go home and follow the instructions, right? I mean, how hard could it be? Pretty hard, it appears. Between 20 percent to 80 percent of us ' differing by disease and drug ' don't seem to be able to do it.
David Harlow highlights recent research that finds that people stopped taking their cancer medications due to high costs and a burden from taking a number of prescription drugs broadening the picture of poor medication adherence.
Site Jabber, a website funded by the National Science Foundation to help internet users separate the scams and frauds from real content, called and asked me for advice on how to find good medical content on the web. The interview reads like a huge promotion for my blog, something I was not expecting and for which I thank them profusely.
If I were to choose a Medigap policy to supplement my basic Medicare coverage, I would still have to buy a separate plan for prescription drugs, since Medigap sellers can't include drug benefits in those policies.
Consumer Reports warns us to be aware of unregulated dietary supplements and provides some valuable resources for people considering taking supplements or who currently do.
The most important thing I learned was that different doctors know different things: I need to ask my internist different questions than I do my oncologist.
This was not some sweet ingÃ©nue recounting the early lessons she learned from a recent encounter with health care. Nope. It was a 62-year-old woman whose husband has been struggling with multiple myeloma for the last eight years and who herself has chronic back pain, high blood pressure and high cholesterol and was at the time well into treatment for breast cancer.
In my recent review of Peter Palmieri's book Suffer the Children I said I would later try to cover some of the many other important issues he brings up. One of the themes in the book is the process of critical thinking and the various cognitive traps doctors fall into. I will address some of them here. This is not meant to be systematic or comprehensive, but rather a miscellany of things to think about. Some of these overlap.
I have been musing about why, despite our fascination with gadgets and timesaving devices, so few of us use the apps and tools that have been developed to help us take care of ourselves.
Being actively engaged in your health care means understanding how the care you are receiving will benefit you. We expect the care we receive and the health advice we are offered to be evidence based, using the best research available. Journalists, a researcher, and a doctor call attention to common practices where evidence is lacking.
In today's fast-paced world, waiting ' whether it's at the doctor's office, in line at the grocery store or for an Internet connection ' is rarely considered a good thing. But when it comes to certain medical conditions, delaying treatment while regularly monitoring the progress of disease ' a strategy doctors refer to as 'watchful waiting,' active surveillance or expectant management ' may benefit some patients more than a rush to pharmaceutical or surgical options.
For many freshmen, the first year of college is devoted to classes, work and socializing, with little thought given to health or longevity. But for Nikkie Hartmann, a Chicago-based public relations professional, the start of her college career also marked the start of 14 years of dealing with cancer.
In The Wall Street Journal's Informed Patient column, Laura Landro notes various efforts hospitals are taking to prevent re-admissions, including Boston University Medical Center's use of a virtual nurse named Louise.
Watchful waiting has become a way of life for many of us. Last week Sam had his first six-month scan following treatment for esophageal cancer. It showed that that the original cancer had not recurred and that the tumors behind his eyes and the hot spots on his kidneys and liver hadn't grown. Sam and his wife, Sonia, are celebrating for a few days before they return to worrying, checking for symptoms and counting the days until the next scan.
Sixty-five years ago, Dr. Emily Gibson's grandmother never asked and was never told what was wrong with her when she was terminally ill. Gibson recognizes the change from 'the patient doesn't need to know and the doctor knows better' philosophy to one of a partnership between a clinician and patient, which is how she practices medicine in Northwest Washington state.
Several months ago my 80-year-old father had triple bypass surgery. As any family member would be, my father's wife, my siblings, and I were both worried and hopeful. We were told that the surgeon was the best and my father was in good hands. Afterwards, we were told that the surgery went well. However, one of the night nurses in the coronary care unit reported that my father took a swing at one of the doctors.
Greg Mortenson, author of the New York Times #1 bestseller, Three Cups of Tea'One Man's Mission to Promote Peace'One School at a Time, is one of the latest fallen, or at the very least, stumbling heroes. Recent controversies have threatened his life's work to build schools in war torn communities like Iraq and Afghanistan. Mortenson has been commended by the likes of Tom Brokaw and Bill Clinton.
This week's roundup includes patients discussing their experiences with diabetes, rheumatoid arthritis, scoliosis, and obsessive-compulsive disorder.
When you or I visit an accountant, a lawyer or car mechanic, we know what our role is and have a pretty clear understanding of what the ' expert' is supposed to do. But when it comes to a trip to the doctor these days the roles and responsibilities of patients and physicians have become blurred and unpredictable'and the patient seems to generally be on the losing end.
I sat in a dingy pharmacy near the Seattle airport over the holidays, waiting for an emergency prescription. For over two hours I watched a slow-moving line of people sign a book, pay and receive their prescription(s). The cashier told each customer picking up more than one prescription or a child's prescription to wait on the side.
Watchful waiting is more than 'doing nothing.' We've collected recent blogs on prostate cancer & watchful waiting from Laura Newman at Patient POV, the NYTimes New Old Age blog, and Gary Schwitzer of HealthNewsReview.
The answer is a definite "maybe", but making it happen will require a whole new way of thinking about Electronic Health Records.
Sara Collins of the Commonwealth Fund and veteran health care journalist Trudy Lieberman look at how the Affordable Care Act is and is not helping young adults stay covered.
Sara had a pain in her side that she attributed to using a new ab machine at the gym. But over the next couple days, the pain increased and made her short of breath. On the third day, she consulted her primary care doctor, who examined her and found nothing untoward. But he recommended that she go to the Emergency Department to get the pain checked out. At the ED, she had a blood test and a chest x-ray, which were both normal. 'Do you want a CT scan?' she was asked by an ED physician. She replied, 'Well I've already been here almost three hours. I might as well.'
The WSJ Health Journal looks at the pros and cons of taking a multivitamin.
Berwick now heads the Centers for Medicare & Medicaid Services. When he spoke in April, on transparency and how we might simultaneously cut costs and improve care, I thought his talk was pretty good. This morning, through Twitter, I came upon a short clip from a Berlin conference in 2009. Here, he tackles the meaning of patient-centered care. It's near-perfect.
New research on use of Kaiser Permanente's patient portal points to a widening digital divide for populations with limited education, health literacy or for certain ethnic/minority groups.
Media coverage of the challenges we face in making good treatment decisions often focuses on and sensationalizes medical errors, catastrophes and risks. So it was great to see this impressive TV news clip circulated by Gary Schwitzer of HealthNewsReview.org in his blog last week.
Medication non-compliance is a pervasive problem resulting from a complex set of factors. Now, using publicly identifiable information, the credit-rating company FICO has developed a Medication Adherence Score that may help health plans identify those most at risk, and Geisinger Health Systems and CVS Caremark are conducting a study to assess whether enhanced doctor-pharmacist communication can help.
Three physicians navigate the perplexing world of health behavior in this week's Inside Health Care round-up.
With humility and understanding of the ever evolving field of medicine, 'A Country Doctor' thanks a patient for 'staying with me.'
Sam Wainwright from New America's Health Policy Program offers his opinion on the controversy surrounding whether or not doctors should present or withhold data about patients' medical risks.
Marilyn Mann is a securities lawyer and a breast cancer survivor. Here, she exposes the recent message she received from a woman who joined her Facebook page.
Engagement and compliance are not synonyms. I am compliant if I do what my doctor tells me to do. I am engaged, on the other hand, when I actively participate in the process of solving my health problems.
I have a fear. My fear is that the public has an unrealistic view of medicine and the science behind it.
We're hosting Grand Rounds for Better Health on Tuesday, July 26th. Grand Rounds is a collection of top recent health care blog posts. For this week's theme and submission instructions...
This week's Grand Rounds collection of posts wrestles with conflicts of interest in reporting on evidence, obstacles to the delivery of evidence-based care, using evidence in practice and care decisions, and providing patient-centered care.
Given the current lack of useful objective information, we should be wary of imprecations for us to thoroughly check out any doctor before we consult him. For many of us, the idea that we can pre-judge the competence of a physician is presumptuous.
Better Health's Grand Rounds is hosted this week by Dr. Ed Pullen, a board certified family physician practicing in Puyallup, WA. His medical blog provides an experienced family physician's viewpoint on medical news as well as giving interesting and helpful information to help patients be informed.
Here is access to my interview-Name Calling in Health Care-hosted by Taunya English on NPR station WHYY.
Do you suffer from decision fatigue when you are sick or anxious or overwhelmed by bad health news? Does your doctor make less well-reasoned decisions about the 10th patient she sees before lunch? How about the surgeon during his second operation of the day? How about the radiologist reading the last mammogram in a daily batch of 60? A provocative article by John Tierney in Sunday's NYTimes Magazine
adds a new layer of complexity to the body of knowledge collecting around decision-making processes.
All the best efforts to practice science-based medicine are for naught when the optimal treatment is unavailable. And that's increasingly the case ' even for life-threatening illnesses. Shortages of prescription drugs, including cancer drugs, seem more frequent and more significant than at any time in the past.
Our discomfort with the array of private and public sector proposals to improve health care quality while holding down costs should not be surprising. Most of us hold long-standing, well-documented beliefs about health care that powerfully influence our responses to such plans. For example, many of us believe that if the doctor ordered it or wants to do it, we must need it.
Recent posts at Health News Review highlight how the over-simplification of medical journalism leads to misinformed, over-treated patients.
When I think back over the past 35 years and my treatment for now four different cancer-related diagnoses, I am amazed by how much has changed. The diagnostic and treatment technologies are light years more sophisticated and effective.
Over-the-counter and prescription drugs are sold with instructions either on the package itself or in accompanying materials. Alas, research has shown that many people find this medication information confusing and thus do not take their medications correctly ' or at all. Can interventions like drug fact panels, reminder packaging and "integrated" health systems help solve the problem?
The perception from many consumers (based on my personal experience) seems to be that products are inferior if they contain non-drug ingredients. By this measure, drug products are problematic...
Evidence-based medicine, in other words, is population-based medicine. The care of any individual patient is based on the experiences of patients who have come before. And while to some extent that is unavoidable, it is also a great peril.
American health care treads a fine line between trying to serve the good of the many and the interests of the individual. But no one has yet figured out a cost-effective, yet humane, way to do both.
The Obama administration has dealt a mighty blow to one part of the health reform law by effectively killing off the CLASS Act, which was to be a baby step in the development of a national program to pay for long-term care.
Two recent speaking engagements provided me the opportunity to think deeply about the discharge process, an area of healthcare delivery rampant with errors and missed opportunities to support sustained healing and health for patients.
Because cancer is primarily a disease of aging, we shouldn't be thinking pink for Breast Cancer Awareness month'we should be thinking silver.
One major challenge for the new Patient Centered Outcomes Research Institute (PCORI) is to make good on its stated mission to improve health care by producing evidence "that comes from research guided by patients, caregivers and the broader health care community."
When my son Ben came down with a sore throat this past summer, he went to his doctor for antibiotics. Both agreed it sure sounded like strep, so without having to wait for the throat swab test results, Ben left the office with a prescription for antibiotics. But were they the appropriate treatment? Do all bugs need drugs?
Nobody likes to wait. And patients and doctors alike are frustrated by the general waiting that seems to be an inevitable part of delivering and receiving care. Here, Art Markman, Lisa Gualtieri, and anonymous patient blogger WarmSocks share their views.
The American people, long protected from the price of health care by insurance, are now forced to act as consumers. This situation is a free marketer's dream.
I was first diagnosed while on vacation in 1994. A doctor entered the room and, without warning, said that I had 'a terminal and incurable form of leukemia' and 'less than five years to live.' Just like that. Turns out he was wrong'
User reviews and ratings on websites can help you locate a reputable handyman, the perfect restaurant for your anniversary dinner or the right TV for your den. So why wouldn't you turn to the Internet to find your next doctor? New health review sites promise to help you make this important decision for yourself or your loved ones. However, patients and physicians alike are finding that these doctor reviews aren't as transparent or useful as they might seem.
When it came time for Jennifer Stevens, an Omaha, Nebraska resident and mother of two, to find an obstetrician for her first baby, she was faced with a dilemma.
It is completely understandable if you associate the term 'cancer survivor' with an image of glamorous, defiant Gloria Gaynor claiming that She. Will. Survive. Or maybe with a courageous Lance Armstrong in his quest to reclaim the Tour de France. Or perhaps it is linked for you with heroic rhetoric and pink-related racing, walking and shopping.
Patients rely on panels of experts to review and approve new treatments and products. The hope is that these experts are unbiased in their evaluations. Here, health care insiders debate whether there are enough conflict-free panelists to go around.
A couple of weeks ago, I was asked to speak as a patient about 'consumers and cost information' while being videotaped for use in the annual meeting of the Aligning Forces for Quality initiative funded by the Robert Wood Johnson Foundation. Here's what I had to say.
Even when you know you should see a doctor, it can be hard to know whether to visit your primary care provider or consult a specialist. In this roundup, physician bloggers consider the range of services covered by PCPs.
I believe that it is unrealistic to expect that we will easily understand and ably engage in team care, shared decision making, care coordination and make use of patient portals of EHRs. Each of these carries the risk of being misunderstood by us in ways that further disenfranchise our efforts and good will unless it is discussed ' and recognized ' as the valuable tool it is.
Today, physicians are confronted with an explosion of new technology, increasingly complex interventions, and an evolving focus on the need for longitudinal support of health issues, requiring increased involvement of our patients. While we may use different terms'engagement, involvement, empowerment, activation'in our discussions, all of them speak to the need to have active participation from patients and, in many cases, their family and other caregivers.
There is a growing recognition that the doctor-patient relationship needs to evolve from the traditional model of dominant doctor/passive patient to one that is more collaborative. Here are examples of how this relationship affects people's involvement in their care.
Recovering from a knee replacement is difficult under the best of circumstances, but for Herminia Briones, the year following her surgery was filled with unexpected pain, complications and confusion. Her repeated attempts to draw attention to her problems went unheeded, beginning an unfortunate and not uncommon struggle with medical error. Why do medical errors happen and how can you help protect yourself from harm?
Instead of enjoying a full recovery, Herminia Briones experienced distressing new symptoms the year following her knee-replacement surgery.
All kinds of people seek out health care, but studies show that not everyone accesses and receives care in the same way. Here, health care insiders look at how access varies among women, children and those with disabilities.
My friend and former Chair of the CFAH Board of Trustees, Doug Kamerow, has written a book that I think you will like. His compilation of essays is wonderful if you have a mild interest in health policy and is important for public health students. It's also a fun read for those of us who spend our days working on the issues Doug highlights.
While commuting to work in September 2009, Ashley Finley stopped her bike short to avoid a pedestrian ' and flew over the handlebars, hitting her head on the pavement. Her chin gushing blood and with concerns about head injury, Ashley and her partner, Goldie Pyka*, immediately headed to an ER. Though their wait time in the Washington, D.C., emergency room was minimal, Pyka says she felt surprised by the number of people who participated in Ashley's care. 'I was expecting to see one person, tell them what happened and have that person help. I wasn't expecting to interact with that many people and to not really be told who they were and what they were there for. I felt we were very passive in the whole experience,' Pyka says.
User reviews and ratings on websites can help you locate a reputable handyman, the perfect restaurant for your anniversary dinner or the right TV for your den. So why wouldn't you turn to the Internet to find your next doctor? New health review sites promise to help you make this important decision for yourself or your loved ones. However, patients and physicians alike are finding that these doctor reviews aren't as transparent or useful as they might seem.
The new year set me reflecting about what I've learned about being sick over the past 12 months that only the experience itself could teach me. You know that old Supremes song, 'You Can't Hurry Love'? I learned that you can't necessarily hurry healing either, even if you work hard at it.
If you could see what your doctor wrote about you in your medical record, would this hurt or enhance your relationship? A new survey found that the majority of patients more than 90 percent are supportive and even enthusiastic about being able to read the doctor's notes. But among physicians, the reaction was mixed.
The hospital can be a frightening place without having to worry about common medical errors that can complicate your treatment and recovery. Why do so many hospitals still struggle to prevent medical errors, how do they happen, and what's the solution?
Katie Ryan-Anderson, a health reporter at the Jamestown Sun in Jamestown, North Dakota, had a question. What did all that gobbledygook on the Explanation of Benefits (EOBs) from Blue Cross Blue Shield of North Dakota mean?
It's always interesting to watch health reform concepts move from policy shops and peer-reviewed papers into the mainstream. Provider report cards have surfaced in venues as diverse as Martha Stewart Living and The Examiner, a supermarket tabloid that promised to reveal 'America's 50 Best Hospitals.'
We are all going to have to become tougher and smarter, even when we are sick if we are going to benefit from the health care available to us. What is it that we really need to know to do this successfully?
Harvard Pilgrim Health Care has moved deeper into the business of transforming health care into a commodity governed by the rules of the marketplace. Plan members can get cash rewards'.if they use facilities for outpatient medical procedures and diagnostic testing recommended by the health plan, not their doctors.
, Otis Brawley MD, Executive VP of ACS and other experts on Twitter today at 2PM with ABC's @DrRichardBesser
for a Tweetchat about overtesting and overtreating in health care. Use hash tag #abcdrbchat
Health literacy isn't just about understanding clinical directions for self-care, such as how to take medications prescribed by a doctor, or how to change a bandage and clean an infected area. It's also about how to effectively navigate one's health system'and that skill is in short-supply'
On a chilly New York day, a sales agent for UnitedHealthcare stood on a noisy street corner in Spanish Harlem pushing Medicare Advantage (MA) plans. He was engaging in table marketing a way to snag new customers, converts from other MA plans, he hoped.
The idea that we should actively participate in our health care now attracts attention akin to the discovery of a cure for the common cold.
Labels describing key features of health insurance policies will become a reality this fall fulfilling a provision of the health reform law that called for more disclosure and transparency. The idea was to copy the labeling for food products'
This week, three health care insiders highlight the role physicians play in promoting patient engagement.
Nora, a third year medical student, came to me in moral distress. Ms. DiFazio, one of the hospitalized patients on her Internal Medicine rotation, was frightened to undergo an invasive (and expensive) medical procedure: cardiac catheterization.
One way NCQA looks at patient engagement is in the choice arena, by helping people pick who they'll get their care from. We provide information for people and purchasers to use to make choices about individual clinicians, practices and health plans, for example, based on objective ratings.
With mobile health consumer market projections ranging from $7 billion to $43 billion,a casual reader might think that a plethora of health citizens are tracking their health, weight, food intake, exercise and other observations of daily living by smartphones and tablets.
Starting in 2015, students who aspire to become doctors will be tested on more than just their knowledge of the sciences. They'll also need to have a good understanding of psychology, sociology and biology and how these forces help shape individual health and behavior.
You may have seen the billboards or gotten a message on your smartphone: Come to our emergency room; our waits are short.
A hospital's claims of highly rated care or state-of-the-art, multimillion dollar equipment may be only part of the equation for where you seek care.
The patient, a young rodeo rider from rural Ohio, lies in a hospital bed, sick and in pain. The doctor has the results of his bone marrow biopsy and the news isn't good.
As I am on service, I realized that one thing that can be easily lost in the race to take care of patients with limited duty hours ' the social history.
One of the most interesting aspects of working as a community-based pharmacist is the insight you gain into the actual effectiveness of the different health interventions.
In 'Participatory Medicine: Must You Be Rich to Participate?' in the Journal of Participatory Medicine
, Graedon and Graedon pose a question: Is the participatory movement leaving [the non-affluent] behind? Their article suggests that only the affluent members of our society can afford care that is participatory. Their premise appears to be built on two assumptions that should be regarded as faulty.
Things are different for me now. Today I belong to that group of people with serious illnesses who spend lots of time in doctors' offices, diagnostic labs, and imaging centers. I quickly discovered that I had some interesting choices about my care.
I get a lot of inquiries about how to find a good doctor. I don't have a good answer. I thought it might be useful to throw out some ideas that have occurred to me and hope that readers will have better ideas and will share their experiences about what has or hasn't worked.
I personally dread the car buying experience for many reasons but one thing that bothers me is the discontinuity. You often see the sales person several times and to some extent the character of your relationship with him/her impacts the decision to purchase the vehicle.
Last week, the waiting room of the out-patient cancer clinic looked like an airport lounge without the rolling suitcases. There were about 20 of us cancer survivor-types talking on our smartphones, fiddling with our iPads, reading The New York Times...What's wrong with this picture?
I understand you are leaving [this hospital]'..By way of wishing you well, here are some thoughts that might help you in your new position
Everyone in health care is talking these days about patient engagement, but a funny thing happened on the way to the discussion: There doesn't seem to be a widely agreed-on definition of what this actually means.
Primary care is the entry point into health care for most people. It provides the continuity of care over the lifespan. From that standpoint, it is the most familiar, trusted experience people have with health care.
Last week's drama at the Supreme Court and most of the media coverage that followed omitted crucial information: how a decision either upholding or junking the Affordable Care Act (ACA) will affect ordinary Americans. Because the health reform law is not well understood by most people, it's worth recapping what might happen.
Several years ago, DeAnn Friedholm had to shop for her own health insurance. The prospective insurance company discovered she had had a couple of benign tumors more than a decade before and so denied her coverage because of her preexisting condition. Just like that, Friedholm had no good option for insurance in case she needed to see a doctor. Whether you are like DeAnn with a preexisting condition, are new to shopping for insurance or trying to figure out what coverage you do have, there are resources to help with this often complicated but important purchase.
If your computer has ever slowed way down you may have been advised to "defrag," which puts all parts of a file together in the same place on the drive, enabling it to run faster and more efficiently. In much the same way, your health care might need to be de-fragged.
"Nagging is still nagging, whether it comes from your phone or your mom," says Jessie Gruman, a social psychologist who heads the Center for Advancing Health, a patient-advocacy group out of Washington, DC. in the recent Boston magazine article, Are Smartphones Changing What It Means to be Human
I've often suspected that if only the E.R. doctor who misdiagnosed me with indigestion had bothered to just Google my cardiac symptoms (chest pain, nausea, sweating and pain radiating down my left arm), he and Dr. Google would have almost immediately hit upon my correct diagnosis.
The decision to buy long-term-care insurance and how long to keep it is among the toughest people make as health-care consumers. The product is difficult to buy'confusing, complicated, and costly.
A good friend with a chronic healthcare condition has over the last few years had a series of invasive procedures that have still not solved her problems.
Two recent online posts build on topics we've explored on the Prepared Patient Forum previously. One on finding and using patient navigators/advocates, the other on making the most of your health care by working with your pharmacist.
Family togetherness is usually a good thing, but sometimes it's a source of conflict, and new research suggests doctors can be slow to recognize when families disagree about the best course of care.
You are increasingly being held accountable for the outcomes of the health care you deliver. Pay for performance; shared savings in ACOs; public report cards'the list of strategies to monitor and measure the effects of your efforts is lengthening. Many of you seem dismayed by the increased weight accorded to the patient experience of care ratings embedded in most of these programs.
My mom has always worked hard'.Now on Medicare and about to retire after 30 years, she will have to continue working hard, as will my retired father. I'm not talking about the time they'll spend maintaining their home or raising grandchildren. I'm talking about the difficult work that they, like millions of others, grudgingly started as they began approaching 65 ' the work of managing their multiple chronic conditions.
Waiting to see a physician is much, much different from waiting for an airplane or a bus'A friend recently asked me: Why do we have to wait so long for doctors and not for other professionals, like lawyers, accountants or dentists? And is there anything we can we do about it?
Our unwillingness to take our medicine as directed is often mistakenly viewed by clinicians and researchers as a sign that we are not engaged in our care. Baloney. Many of us would be perfectly happy to do so were it not for those pesky side effects.
From day one, Patient Power has been about giving a voice to patients and addressing the real concerns and issues of patients and caregivers. That's one reason we do regular visitor surveys, such as our current Spring 2012 survey. We constantly strive to better understand the people we serve; their needs and concerns; and the impact of what we provide. The initial results are fascinating and I wanted to share some here...
Turns out we're a nation of doctor pleasers when it comes to health care. A recent study found that patients avoid challenging their physicians because they're afraid of getting the "difficult patient" label.
The pianist was playing Chopin in the beautiful but deserted four-story lobby of the new hospital where my father was being cared for. The contrast between that lovely lobby and the minimal attention my dad received over the weekend, combined with a report about the architectural 'whimsy" of a new hospital at Johns Hopkins make me cranky.
Virginia was particularly concerned that she would not get medical treatment after she turns 75. She had heard at that age, 'they send you a letter. They are going to start sending you literature on death.'
The typical week of sick time provided most employees may be enough if you get hit with the flu or a cold. But what happens when you have a chronic condition, such as Crohn's disease, multiple sclerosis or diabetes, and the time off you need exceeds your number of sick days? What protections do you have if you require major surgery?
As I like to remind my women's heart health presentation audiences, I am not a physician. I'm not a nurse. I am merely a dull-witted heart attack survivor. I also warn them that a lot of what I'm about to say to them is already available out there, likely printed on some wrinkled-up Heart and Stroke Foundation brochure stuffed into the magazine rack at their doctor's office.
Neil Versel shares his personal experience of his dad's passing and the lack of quality of care that he received at one hospital contrasted with well-managed care at another facility. He wants to educate as many people about the disease his father had (multiple system atrophy), the dangers of uncoordinated care and poorly designed workflows.
It's difficult to imagine that professionals working in a practice or department or unit where they are constrained by their own colleagues misbehavior are going to have the energy to invite us to learn about and share in decisions about our treatment...
People have a right to receive in plain language a summary of what doctors bill, what insurers pay and how much they themselves must pay.
My mom passed away last December to Stage V breast cancer metastasized to her liver. During this battle she developed ascites (an accumulation of fluid in the peritoneal cavity) as her liver failure progressed. This accumulation of fluid was not only extremely uncomfortable but painful as well.
Another hospital report card showed up last week adding to the pile of ratings already available. A few years ago there were more than one hundred offered by various for-profit and not-for-profit businesses and government agencies. The newest one is the Hospital Safety Score report card from the Leapfrog Group...
After being on the 'other side' of medicine, Kevin R. Campbell, M.D., experienced the stressors of waiting for someone going through surgery and has learned ways to improve his practices as a clinician to help make the experience less worrisome for loved ones.
While the benefits of having (and keeping) a good physician may be evident, how do you find this just-right-for-you clinician?
Along with the invention of smart phones, an entire medical mobile application (app) industry has cropped up, promising patients enhanced connectivity, health data collection, and overall care quality at lower costs...For all the hype about robo-grannies, aging in place technologies, and how high tech solutions will reduce healthcare costs, the reality is that these hopes are unlikely to be achieved with the baby boomer generation.
A few weeks ago, I spoke at the Connecting Healthcare + Social Media conference in New York about what we patients want from health social media. Michelle McNickle, New Media Producer for Healthcare IT News
wrote the following piece summarizing my talk and the '6 things patients want from social media.'
It can be offensive and hurtful when someone asks a well-meaning, but otherwise insensitive, question to someone who has an illness. Here, Kelly Young, Allison Blass and Andrew Schorr offer their responses.
The gap between the demands placed on us by U.S. health care delivery and the ability of individuals even the most informed and engaged among us to meet those demands undermines the quality of our care, escalates its cost and diminishes its positive impact on our health.
Though I may want fast food health care when I'm healthy, I don't want it if I'm sick or have the potential to be sick. People want to have the opportunity for a dining-in experience, not just fast food.
Buzz about the recent Supreme Court's health reform decision has hovered mostly over the individual mandate---the requirement that everyone carry health insurance---and over push back on Medicaid expansion....But what about the 160 million Americans who have coverage from their employers?
Josh Freeman, M.D., argues for research that looks at the patient as a whole. CFAH President Jessie Gruman cautions that if researchers are not advised, supported, and required to include the patient's perspective, it will not occur.
In the past two days I have filled out two post-dining surveys from Open Table, and it occurred to me that it would be great if there were something similar that could provide the immediate guidance we need to participate in our care.
In some surveys, U.S. consumers seem primed for health engagement, liking the ability to schedule appointments with doctors online, emailing providers, and having technology at home that monitors their health status.
Turns out that while most of us (90%) would like be able to make a doctor's appointment and check lab results online'.85% of us also still want the option to talk to our physician face-to-face. These are the findings from a recent 2012 study conducted by Accenture.
In our current health care environment, in which patients are sometimes discharged quicker and sicker, they are expected to be more in charge activated than ever. They need to make and keep follow-up doctor appointments, manage complex medication regimens, organize home health care and visiting nurse appointments, store powerful medications, and track, monitor, and report changes in their health status. It's a tough order, especially for people like my father, who do not know or understand the health care system, and find its workings difficult to navigate.
My mother, Sandy Ying Zhang, is my role model and my inspiration for what I do every day. She was diagnosed with breast cancer when she was in her forties, and fought it courageously for seven years until she passed away in 2010.
Steven Novella of the Science Based Medicine blog asks, 'If this is a pilot study only and we should not base any firm conclusions on the results, then why the press release?
The online migration of health information services and technologies (IT) has been a popular focus for IT investors and developers recently. But we have not been as captivated by their efforts as we have been by those of, oh, Facebook, say. Or Lady Gaga's fan site. Or eBay. In fact, most of us are reluctant to make use of the thousands of helpful health IT tools launched to help us get healthier, take care of ourselves and make good use of our health care.
Hospital and physician ratings and patient satisfaction scores are all inter-related. Do they provide useful, meaningful information-and will we use them?
Growing up, I was always in awe of my doctors. It was almost as if they lived on a cloud. You never ever questioned their expertise, and very rarely would you ask for a second opinion. Going to the doctor was a nerve-wracking experience, where you spoke only when they asked questions. I always wondered what would happen if I did question them. But I never did. I was too afraid.
When it comes to customer service, retail stores, banks, airlines and hotels are tops. Health care? Not so good.
John Burke is a respected patient advocate who has participated in more than 30 clinical trials and has been employed as a health care policy expert for over 20 years. This is the first in a series of interviews with patients and patient group advocates about their experiences with and attitudes toward comparative effectiveness research.
Kristen Gerencher of The Wall Street Journal’s MarketWatch, recently interviewed me about internet users and online health information.
After writing about trying to choose the best hospital for my upcoming cataract surgery, I wondered if a few quality measures might offer a clue or two about how to better honcho some of my care, like the one that asks hospital patients if a nurse explained medications given to them. Since many ratings schemes rely on patient satisfaction data collected by the government, I decided to explore further.
The essays collected here reflect on what it felt like as a patient with a serious illness, to cobble together a plan with my clinicians that works and to slog through the treatments in the hope that my cancer will be contained or cured and that I will be able to resume the interesting life I love.
The dynamic nature of health news makes it challenging for clinicians and patients to stay abreast of new developments, interpret data and follow shifting guidelines.
Risk reduction, relative change, probability, and absolute versus relative risk'?¦how are these terms different from each other and how do they influence people's health care decisions?
When Consumer Reports (CR)
first saw the rising national emphasis on Comparative Effectiveness Research (CER) three years ago, we were pleased: CER is what CR
does. However, when it comes to health, we realized how difficult it is to do CER: CR
would need to rely on good research done by others.
Every day we're bombarded with news stories about our growing risk for getting this or that. If you eat fish you have a 30% greater chance of getting something or other, and if you drink three cups of coffee a day...Pretty soon it's all background noise.
As a medical student, I held the medical world in great awe. All that changed the day my mother became a patient and I began to see firsthand not only how difficult it is to navigate the healthcare system, but also how scary and unwelcoming the hospital can be.
We're trying to figure out if CER is just more of the same. Health policy has a love affair with old wine in new bottles, that is, rebranding old solutions with new acronyms. Because patient-centered care and engagement are fashionable at the moment, is PCOR merely a way to dress up CER to be more exciting and attractive (or palatable)?
I don’t think so, and here’s why. I have yet to meet a physician who did not agree with the importance of effective physician-patient communication…in principle.
Every year, over 100 million Americans don’t go to the dentist because they can’t afford it, leaving many in pain. How can people pay for dental care?
A few months ago, I spent 8 days in the hospital at the bedside of a loved one. Although I squirmed the whole way through a tenuous ICU course and brief stop-over in a step-down unit, it was good for me to be reminded of what it feels like to be a patient - or at least the family member of one - in the hospital.
Most of us would agree that doctors should not treat patients without their consent, except in special cases like emergency care for an unconscious patient. It’s not enough for doctors to ask “Is it OK with you if I do this?”
In a recent post entitled “The Joys of Health Insurance Bureaucracy” I described how it took me (a physician) over three months to get one common prescription filled through my new health insurance plan. Of note, I have still been unable to enroll in the prescription refill mail order service that saves my insurer money and (ostensibly) enhances my convenience.
Epilepsy is a complex disease. An optimal quality of life and seizure control for the person with epilepsy – so that they can be a fully productive member of society – is our goal. Our main concern about CER and our constituents is that one treatment may provide a high quality of life with seizure control and few side effects for many but not for all patients.
Recently, I spent some time answering the questions on one of those CAHPS surveys for doctors. CAHPS stands for Consumer Assessment of Healthcare Providers and Systems, and these days hospitals ask patients to use them to review not only their hospital experience but their experience with their doctors as well.
Most patients know what this feels like, so it’s reassuring to learn that academics are actually studying it: our fear of being labeled a “difficult patient”.
The signs are everywhere - prescriptions doled out into weekly reminder boxes, blood glucose monitors in a desk drawer, maybe even an adrenaline injection pen stashed in a diaper bag for allergy emergencies. From high cholesterol to HIV, millions of Americans have a medical condition that they manage mostly on their own.
Being a prepared patient means taking on some of the jobs 'big and small' that are necessary for staying healthy and coping will illness. Just like with any other job, it helps to have the job description clearly laid out before you start work. Your doctor may be expecting you to do certain tasks from filling prescriptions to changing your sleep or diet that can help you make the most of your care.
In many ways, this country is a victim of its own successes. While medical research and technology has brought phenomenal benefit to many patients, we have grown indiscriminate in when and how we adopt new medical miracles.
My husband is an insulin-dependent diabetic who has accumulated an array of chronic health conditions. I confess to days in which I play the role of diabetes cop'?¦I hate it when I do this, and yet it seems to be a role I have fallen into. But I had never thought of living with a chronic condition as a form of work until I interviewed Dr. Victor Montori.
Comparative effectiveness research will be transformational if done properly. The critical thing is that it be done without built-in bias.
We've been warned about the impending patient revolution. We will not be ignored. And we'll force meaningful change. After all, as the recent documentary How to Survive a Plague reminds us, the gay community and others mobilized themselves during the AIDS crisis to great effect. The same thing is possible today, right?
Many people assume that their test results will be automatically sent to the right doctors and don’t bother to request that it be done.
As a community, our focus is on the discovery of disease-modifying treatments. This is the burning desire of everyone in the [Huntington’s disease] community.
We do better when we have meaningful conversations with our clinicians about our health care. Proposals to require and document that such conversations take place at strategic points are growing. Here’s a cautionary tale.
If we want our end-of-life wishes to be properly carried out, we have to prepare in advance and our clinicians must also be prepared to help us realize them.
A new report from Minnesota on medical errors shines a light on the fact that their frequency remains stubbornly high. Can patients and caregivers make a difference?
Two recent experiences left me ornery and impatient about the current state of mobile health apps. Why haven’t they just taken off?
I got involved in patient safety many years ago after I lost my mom in early 1995 due to medical errors. While my mom was in a coma for seven weeks, I met other families in ICU. Many of them – the majority – had unanswered questions.
Somehow, I don’t think of money-back guarantees when I think about going to the doctor. Yet as textbook marketing principles creep into health care, a few medical providers are beginning to look like sellers of toothpaste and detergents.
Have you heard that soon most primary care in the US will be delivered by teams? Yep. Team-based care is one of the characteristics of the patient-centered medical home, a way of organizing the care of patients that allows primary care clinicians to see more patients in a day while at the same time delivering better care.
To me it’s obvious that Comparative Effectiveness Research (CER) is a good way to get to meaningful patient outcomes. It compares real things that will make a difference. Right now we have efficacy without effect. In my field we are worried about drug-herb interactions; what about drug-drug interactions? I’m looking forward to CER really drilling down to what works for patients in a meaningful way.
If I didn't object to receiving what I recognized as too much medical care, it should not be a surprise that, according to one study, many inappropriate tests and treatments are being provided more often, not less.
There is a large disparity of information across the medical world. If you consult 6 doctors, you’ll likely get 6 opinions about how to treat your cancer. And 5-year survivals may vary as much as 50%. This is inexcusable.
How many friends/family members/social workers does it take to change the mind of a frail person? Even if the frail person was/is one of the leading geriatric social workers in the country?
Should nurse practitioners, RNs, physician assistants, pharmacists, social workers and others including, yes, peer patients, take up much — or even most, of doctors’ tasks?
I find myself relieved that I don’t have to figure out how to document (or not document?) concerns [in patient records]...Wondering what they are? Ok, I will tell you, but shhh...don’t tell my elderly patients that I may be considering these topics as I care for them.
There are 30,000 Americans alive today with symptoms of HD, and an additional 200,000 are at risk...Generally, we see CER as an important priority to inform clinician decision making.
Shortly after we moved to Washington, DC, my wife and I purchased a basic home security system, the kind with a programmable keypad, multiple door alarms and a motion sensor. All things considered, it's hard to argue that the benefits of this preventive measure have outweighed its cumulative harms.
Focusing just on what the patient brings to the party in terms of their “knowledge, skills and confidence” is only half the problem. What about physician activation?
Who would have thought that Twitter, this tiny aperture – a mere 140 characters – could connect me with so many smart, feisty, tough people who share, amplify, and improve on my efforts to spread carefully chosen health and health care content through their responses, retweets, modified tweets and acknowledgements?
Here’s why I tweet what I tweet...
Americans have embraced their role as consumers in virtually every aspect of life: making travel plans, trading stock, developing photos, and purchasing goods like cars and washing machines. That is, in every aspect of life but health care.
When the report called "Tracking for Health"
was released last month, media headlines announced: “Over Two-Thirds Track Health Indicators!”
Surprisingly, very few headlines ran the real news from the report: “Only 21% Use Technology to Self-Track!”
Yet as of last autumn, more than 500 tech companies are busy developing The Next Big Thing in self-tracking tools.
Wherever you turn, there are complaints about health insurance rates. A Pennsylvania woman tells me her monthly premium will soon be $100 more than it used to be. A New Yorker finds the premium for retiree coverage rising 24 percent...
A few discouraging reports on patient engagement have skittered across my desk in the past few weeks. What's going on? Why are so many of us so slow to engage in our care when it is increasingly clear that we will do better if we participate more fully? Here's what I suspect...
The problem with satisfaction data related to doctor-patient communication is that, at face value, it simply doesn’t correlate with other published data on the subject. There is a disconnect between what patients say in satisfaction surveys and what happens in actual practice. Here’s what I mean…
A funny thing happened at my doctor’s appointment on Friday. I checked in, then a med-tech asked if she could take my picture, “for the hospital record.” I couldn’t contain my wondering self. “What is the purpose of the picture?” I asked.
When I read Trudy Lieberman’s post yesterday, I was reminded that the highly charged political debates about reforming American health care have provided tempting opportunities to rename the people who receive health services. But because the impetus for this change has been prompted by cost and quality concerns of health care payers, researchers and policy experts rather than emanating from us out of our own needs, some odd words have been called into service.
In the Coen brothers remake of the 1969 movie True Grit, Mattie Ross, an intrepid 14-year-old, is determined to hunt down and kill the man who murdered her father. To accomplish this, she hires U.S. Marshal Rooster Cogburn, (played by a mumbling Jeff Bridges) a rough, one-eyed veteran of many such quests then announces that she plans to come along. She figures she is prepared.
A few days ago, Empire Blue Cross Blue Shield sent me one of those Medigap sales brochures that seniors usually expect during the fall open enrollment season.
Perhaps the most powerful influence we can have in health care is simply acknowledging that we have choices and wondering, out loud, what those might be. Whether or not you plan to do in-depth research about your treatment options, consider asking your doctor three simple questions.
What I’ve learned since my heart attack is that, until you or somebody you care about are personally affected by a life-altering diagnosis, it’s almost impossible to really get what being sick every day actually means…
Here's the bad news: We will not benefit from the health care services, drugs, tests and procedures available to us unless we pay attention, learn about our choices, interact with our clinicians and follow through on the plans we make together.
If you want to see what health care is really like, there’s no better way than by becoming a patient yourself. To paraphrase the wisdom of Dr. Seuss, “Oh, the things you’ll learn!”
“Maybe we shouldn’t urge people to engage in their health care: it sets them up for failure and punishment from their clinicians.”
A senior patient advocate and researcher recently made this comment to a gathering of experts in patient engagement. For a few minutes, I was inclined to agree with her.
In America, the conventional wisdom is that we don't ration health care. But we do, and there's no better example than patients rationing themselves when it comes to the medicines they take.
I know that each time I have received a cancer-related diagnosis, I felt like I had been drop-kicked into a foreign country: I didn't know the language, I didn't understand the culture, I didn't have a map and I desperately wanted to find my way home.
Some of us are heroes, defiantly wearing stilettos to chemotherapy or battling our over-extended doctors to ferret out a cure for our or our mom’s disease. We want to demonstrate that with a ton of chutzpah, considerable energy and a little luck, we patients can overcome some of the limitations of health care and live to tell the tale. But is a portrait based solely on these types of experiences representative?
Maligned over the last decade as places to avoid because of the price of the care they delivered, last week’s release of a study by the RAND Corporation goes a long way toward improving the image of hospital emergency rooms.
In order to realize the full promise of patient-facing tools like EMRs, PHRs, patient portals and the like, we need to be more mindful of the following “first principles.”
Last week, a friend told me that her mother had been fired as a patient by her primary care physician in a letter she received in the mail. Last week, I fired my oncologist by email. My friend and I both wrestled with accepting that, in fact, this relationship needed to end.
Recently, Inspire passed a milestone: five million posts written by the patients and caregivers in their online health community. Brian Loew, founder and CEO of Inspire, reflects on what Inspire’s learned from patients and caregivers.
My experience is that e-patients and clinicians can agree that they seek "best health". Yet there is such a disconnect, such frustration, so much of the time. A pervasive gap exists between the way clinicians and e-patients approach this goal...
Sometimes it is clear that the only response to a health crisis is to call 911 and head for the emergency department. But so many times the course of action is less obvious while the demand for some action is urgent.
Will consumers buying coverage in the new state shopping exchanges find lower or higher rates? On one side are those who say the newly insured will see lower premiums for coverage.
Have you ever felt like you needed to apologize for a health problem you were facing? I have experienced this often over my many years in the healthcare system.
Yesterday the blog of WIFR-TV in Rockford, Illinois, featured a small story about community groups in the state applying for federal grants to help educate customers coming to the new health exchange in October.
Have you ever felt that claims about the effects of our access to new and more health information overshoot the mark?...Given the sheer volume of information online, you should be able to find robust information about each of these issues that could transform the way you care for yourself.
It is indeed tempting – and common – to spout trite platitudes designed to somehow make people feel better about those bad things with bumper-sticker pop-psych. But can platitudes really lend meaning to a life-altering health crisis?
On July 1, Medicare begins a second round of competitive bidding for medical equipment and supplies, such as diabetes testing strips that beneficiaries use to check their blood sugar levels. There’s nothing remarkable about any of this except that the industry is fighting to make sure that competitive bidding does not happen...
I couldn’t do it. I couldn’t ask the nurses and doctor who looked after my daughter to wash their hands.
I’m not a big fan of bargaining and my half-hearted attempts to get a better price for a used car, garage sale find or contractor’s service have been mostly unsuccessful. There’s always that nagging feeling that the seller is laughing with delight once I’m gone, thinking, “I really pulled one over on that rube!”
And so it has come as somewhat of a shock to me that medical care has become the new garage sale, as far as haggling goes.
As health care becomes increasingly unaffordable, many believe quality would improve and costs would decrease if we treated health care like other consumer-driven markets...If only that were true...
This week in health news: Using shame to promote weight loss doesn’t work | Black nursing homes face challenges | Hispanic and Black children not getting the right asthma meds | Electronic health records not widespread
I have been treated for five different cancer diagnoses. Some would call me a cancer survivor. I call me lucky...
It’s hard to say it was a surprise last week that the Obama administration delayed implementation of the employer mandate — that pillar of health reform requiring employers with more than 50 employees to provide health insurance or else pay a fine.
Here’s a thought experiment presented a recent conference on healthcare consumer (ah hem, patient) advocacy. Let’s say that you’re told you need surgery of your knee. It’s an elective surgery to repair a torn knee ligament, the ACL. Your insurance covers part, but not all, of the cost. How do you choose which hospital to go to?
A strong emotional response to cancer treatment is common, but I didn’t need to suffer so much or so long from my fears. The lingering intensity of those responses can affect whether and how we attend to the tasks of survivorship.
As a doctor, I am compelled to write because of what I know is occurring with alarming frequency in our country. Americans are skipping needed and recommended care that could save their lives and allow them to live to their fullest. Patients are more distracted, as life is more complicated and busier than ever. Households have both parents working, sometimes two jobs, just to make ends meet.
Patients have a way of hanging onto every nonverbal cue they notice, no matter how small.
The specter of loss of choice and freedom to select the doctor you want haunts again. This time it’s being raised on the airwaves with an ad from Americans for Prosperity…
Have you noticed all the articles in the health care press lately touting health information technologies’ ability to increase patient medication adherence? Smart phone-based apps, Smart pill bottles and Patient Portals are all about trying to get patients to do something (take a medication) which some physician somewhere has deemed to be the right thing for the patient to do. Some would call this process of generating adherence patient engagement.
We are not the only ones who must be convinced that we have unique health concerns following the active treatment of our cancer. Clinicians must also believe that special care for us is important, and they have to learn how to provide that care.
Recently, I participated in an excellent meeting, (Patient Summit USA 2013), whose primary theme was patient adherence. Thankfully the other speakers had all moved beyond the notion that "patients forget to take their medication" and that adherence can be solved by fancy pill caps or bottles; yet I was struck that most did not yet fully appreciate the challenges of a complete adherence picture, particularly for patients on multiple therapies.
Back when I was a medical student (in the Cretaceous Period) we were taught that someone once did a study comparing folic acid levels in the blood of cancer patients compared to the blood of healthy patients. The cancer patients had, on average, significantly lower folic acid levels. And the ones with the largest, fastest growing tumors tended to have the lowest folic acid levels. “Aha,” they thought. “Something about folic acid deficiency predisposes them to cancer. We should give folic acid to cancer patients.” Bad idea.
In a recent Baltimore Sun piece, healthcare writer Marie McCarren wrote an op-ed providing “A prescription for fewer medical errors” — reflections from an emergency room visit with her husband that later turned into a stay on the intensive care unit. McCarren emphasized the need for healthcare providers to work at clearly communicating the ways in which family members of patients can help make care safer.
Why is it that survivors of other devastating personal traumas – fires, floods, tornadoes – rarely use celebratory hero language? Mostly, they speak of themselves as lucky…
Here’s a wonderful idea: patients and providers working together in shared decision-making, accepting and trusting each other’s input. Isn’t that the goal our health care system should strive for? Not so fast.
For many of us, receiving a cancer diagnosis often includes hearing some statistics about the average or mean survival of people with this stage of this type of cancer. The end of active treatment may arrive accompanied by additional statistics. It is difficult, even for those schooled in the meaning of such numbers, to figure out what they mean for an individual.
In the most recent newsletter, I talked about wanting to trade bodies with someone...just for one day. This way they could tell you just how freaked you should be about the symptoms you’re experiencing.
This week in health news: When dieting encouragement goes wrong | What works for more walking at work | Vaccines: Not just for babies | Health insurance matters for cancer survivors
I was naive when I decided to enter medicine. My impressions then were that doctors always “did” stuff—for patients, and to patients. We would do stuff to you (examinations, blood tests, scans, surgeries) in order to help you.
People continue to struggle finding information on how much health care services cost. Toni Brayer, Barbara Bronson Gray and Ray Burow weigh in.
My experience has taught me that once active treatment is over, regardless of my tendency to regard every lingering ache or pain as a recurrence, if I’m getting my survivorship care from my treating oncologist or other survivorship specialist, I have to find myself a primary care clinician who knows my health history. Why?
My husband and I returned from a weekend away to find a message on our answering machine saying that we owed money to the hospital and that if we didn’t pay it within 10 days, they would send the bill to a collection agency.
The media has discovered another delay in another provision of Obamacare, and the new delay affects consumers’ pocketbooks directly...
Not too long ago, I had the misfortune to fall from my bicycle, and within minutes my bicycle and I were on our way to the local hospital via ambulance with serious but non-life threatening injuries. As a result of this incident, I got to experience the health care system first hand, up close and personal. Thus began my unexpected journey as an undercover patient...
Ever heard the saying "You never step into the same river twice"? It has taken me a long time to apply its meaning to my experiences with five different forms of cancer as well as a variety of serious late effects of my treatments...
My doctor can help me figure out what is right for me by considering my values and preferences and helping me to understand the scientific evidence.
I’m not concerned about HIPAA. I’m concerned about how little my doctor cares for my privacy in his own office...I say my name, realizing that if someone is interested in identity theft, the check in process with the doctor’s front desk makes me a pretty easy target...
Health centers' front office staff are important members of the care team. They greet us when we arrive, make extra efforts to schedule appointments that fit our schedule, direct us to the right person when we call, and work to squeeze us in for those same day appointments. At least we hope they do...
I'm always juggling more than one role, making second-to-second trade-offs depending on which is the most demanding at the moment. Becoming ill demands that we shift responsibilities around.
Only half of patients take the drugs as prescribed for them by their physicians. So what happens to the other half? And why does this costly problem continue despite efforts to improve patients’ adherence to prescription medications? There are many potential solutions, but not all of them are likely to become available...
What people pay for medicine can vary widely. And a recent study found that 20% of Americans take five or more prescription medications. These 'Be a Prepared Patient' resources can help people pay for and manage their medications.
We want to have choices about the health care we get and who provides it. Many of us think we have that now...
For most of us, the "cost" of health care isn't what brings us the most anxiety. It's when we're patients or helping a loved one find care that so many of us are deeply concerned about the price of our health care: what we – personally, individually – pay to acquire the services, drugs and devices we need...
When I was practicing oncology, I never thought much about the concept of survivorship. I was busy running a research lab and rounding on my hospital's inpatient oncology unit. Until I was diagnosed with cancer myself, I didn't really appreciate how blurry the line is between being a survivor and having the disease...
Have you noticed that the images of most sick people on TV, in drug ads and on health insurance websites look pretty good? There is a big, diverse herd of us out here who are ill and who don't see our experience realistically portrayed by the media. So what?
Imagine you take your car to a mechanic and he says, "Your car looks fine to me. The paint is still shiny. It's not very old." It just wouldn't happen. So why would a doctor say to someone with rheumatoid arthritis, "Your hands don't look too bad"...
In a lecture hall of fellow clinicians-to-be, I was told that my job as a physician is not to be concerned with costs but rather to treat patients. What an odd message. Does medicine's unique role of saving lives exempt it from keeping an eye on the register?
Will all the White House messages, the stream of breathless Twitter updates on the number of hits and enrollments, and the press hype surrounding opening day send the uninsured public into panic mode?
What's your assessment of the health news and information produced by the media these days? Is it accurate? Useful? Interesting? Improving, or worse than five years ago?
If Hattie had but one flaw, it was that she held her doctors in too high esteem. So when her blood pressure came up a little high, she was too embarrassed to admit that she hadn't taken her prescription in over a week. Two days later, Hattie showed up to the emergency room...
It's a widely accepted truism that increasing patient engagement in health care leads to lower costs and better outcomes. And really, it shouldn't be a problem to convince us to act on our own behalf and engage in the behaviors that support health, right? I see two problems with this viewpoint and with the assertion that patient engagement will lower the cost of health care...
"I have been treated for five different cancer diagnoses. Some would call me a survivor. I call me lucky," CFAH President Jessie Gruman observes in her lead post in the series, What I Wish I'd Known Earlier About Cancer Survivorship.
Digging through hundreds of studies, articles and other firsthand sources stretching back for decades, I was stunned to discover that repeated evidence of unsafe, ineffective, wasteful and downright random care had had no effect whatsoever on how doctors treated patients.
What can you do to ensure that you obtain just the right amount of care? It isn't easy — if it were, then we wouldn't have the Goldilocks problem: Is it too little? Too much? Here are five suggestions that may help...
How can doctors understand what it's like to be ill? These stories illustrate the power of walking a mile in a patient's shoes.
When price enters into examination room discussions, even straightforward recommendations can get complicated. How can you decide if the price of treatment is worth it if you don't understand why your clinician recommended this particular course of action?
In the world of health care, as in most enterprises where we must interact with one another for mutual benefit, we need words to describe one another. And the words we have for us people who use/need/want health care frankly don't cut the mustard.
Sharing a funny article is as simple as copying everyone on an email or clicking the "share" button on a website. But sharing the results of your medical tests with multiple physicians is rarely so easy. Our resource "Sharing Medical Information with Multiple Doctors" can help.
On Monday, Charlie Ornstein of Pro Publica provided the latest word on the usefulness of hospital ratings, an issue that seems never to disappear despite the growing body of work that raises questions about the methodology used to create them, their conflicts of interest with sponsors, and most importantly, their usefulness to the public.
Last week, I was interviewed by Dr. Pat Salber and Gregg Mastors on their BlogTalkRadio show, This Week in Health Innovation, about patient-centered care, patient engagement, shared decision making and the cost/quality trade-offs involved, and what all of this means for health care delivery.
Outsourcing work to cheaper workers is a common strategy of corporations. It has largely escaped the public’s notice, however, that much of this new labor force isn't located in Southeast Asia, but is rather found here in the U.S. and is virtually free. It is us...
I'd said, "I know this isn't a big deal," when I meant "This is really bothering me." To be truly engaged patients, we have to give ourselves permission to say what we really mean.
I'm concerned that the frantic drive toward evidence-based medicine as a strategy for quality improvement and cost reduction sets clinicians and patients up for a conflict about our shared picture of health care.
A distressingly large number of people who have the letters M.D. after their names answer our health questions in such jargon-heavy ways that it makes our situation even more confusing. Time for a SMOG check – aka the "Simple Measure of Gobbledygook."
That "s.o.b." abbreviation in your chart doesn't indicate what you think it does. Health care has a language all its own consisting of ordinary words used in ways that convey certain shades of meaning. And sometimes they reinforce the paternalism and power imbalance that have historically existed between health care professionals and their patients.
My ultrasound came back "likely benign" with the recommendation that I follow up in six weeks to be sure. Over the next few weeks, I received one bill after another that totaled $1,000. Unable to pay, I felt abandoned by the system to which I had committed my career and did not call to schedule a second ultrasound...
During my recent visit to Canada, I had a chance to meet obesity expert and medical director of Canada's Bariatric Medicine Institute, Dr. Yoni Freedhoff. What he had to say was somewhat surprising...
Current efforts to make health care more "patient-centered" include inviting some of us to advise on research priorities, care organization and delivery under the assumption that, as patients, we understand what patient-centered outcomes and care are. What do patients know about the inner workings of health care, after all?
It is challenging, in the years following a cancer diagnosis, to assemble health care that protects us from the lingering effects of the disease and its treatment and that alerts us to a recurrence or new cancer. I hope these reflections will help those who've been diagnosed with cancer live as long and as well as they can...
Let's stop telling the public that exercising and eating blueberries are guarantees for avoiding frailty and disability. Let's start talking about how to maintain our quality of life as we age and inevitably encounter health problems.
You may have noticed an uptick in messages from your health plan or clinician notifying you that "You are the captain of your health care team." My response to this message? Bad metaphor.
After half a lifetime of following the Medicare program, on October 1, 2013, I became a Medicare beneficiary. I'm part of the leading edge of baby boomers joining the program, ten thousand a day. Here are some reflections upon joining...
You've recently moved and need to find a new doctor. What's available online to help you learn about the quality of the doctors in your area?...
Last week at a New York City meeting of the Association of Health Care Journalists, Elisabeth Benjamin, a vice president of the Community Service Society, tried to explain the New York health insurance exchange to a group of skeptical journalists who had more than a passing familiarity with the topic...
What can we learn from an experiment conducted on a single person? How relevant are results to other patients or populations or diseases? While most of us encounter a cascade of events throughout each of our illnesses, in the end, what we bring to the table is our experience through the lens of our own unique attitudes, beliefs and histories...
I read recently about a medical conference on breast reconstructive surgery following mastectomy, to which not one single Real Live Patient who had actually undergone breast reconstructive surgery following mastectomy was invited to participate...
In part one of our series, we look at the basics of picking a health insurance plan that's right for you, your family or a loved one. Our 'Be a Prepared Patient' resources can help you find the best coverage at the best price for your health needs...
In part two of our series, we look at the difference between Medicare and Medicaid. Our 'Be a Prepared Patient' resources can help you figure out if you qualify for either of these or other special health care programs...
In part three of our series, we look at insurance terms that are used most often to describe or explain how much you’ll pay and what your benefits are. Our 'Be a Prepared Patient' resources clarify these common phrases...
In part four of our series, we look at a few ways to estimate the cost of your care ahead of time so you can make the best choice for you and your loved ones. Our 'Be a Prepared Patient' resources offer trusted websites and tips to get started...
In part six of our series, you'll find out what key pieces of information you need to know about your new doctor's office. Keep it handy with your personal health records or household files...
In part seven of our series, we offer advice about how to make the most of your doctor's appointment. Here's what you should do before, during and after your visit...
In the eighth and final part of our series, we explain who the various people are in your doctor's office, from nurse practitioners to lab technicians. Knowing their different roles can make your visit go more smoothly...
Many years ago, Alfred Korzybski wrote that "the map is not the territory". This distinction has implications for the role of patients' voices in health care planning and policy...
What's the key to reducing costly emergency room visits and readmissions? People who lack convenient access to a health care provider, with or without insurance, return to the emergency department or hospital out of need and desperation...
We know that the U.S. has the most expensive health care in the world. But beyond noting that dubious achievement, we seldom ask why...
Team-based care has been endorsed by the professional organizations of our primary care clinicians, and there is a lot of activity directed toward making this the way most people receive their regular health care. What does this mean for us? It's not clear...
It's unfair to advise people to find out the price of a treatment when the price-transparency deck is stacked against them. So who will help patients find reliable price information and (hopefully) bring down the cost of care?
Getting and being sick changes everything in your life, and that includes how you manage your health. For people focused on so-called patient engagement, health empowerment, and social networking in health, the elephant in the room is that most people simply don't self-track health via digital means...
If hospitals, health plans and physicians expect patients to change their behavior, they themselves have to change the way they think about, communicate and relate to patients. As a first step, I suggest that they stop blaming patients for everything that's wrong with health care...
Lately, the public's faith in the safety of prescription and over-the-counter drugs has been making me uneasy. Why do so many of us continue to purchase pills that are not effective in causing weight loss, swallow syrups that promise to cure diabetes, and fiddle with our medication-taking regimens?...
When we talk about a consistently clear pattern of news stories that exaggerate or emphasize benefits while minimizing or ignoring harms, we are talking about stories exactly like this one...
Last fall, a Pennsylvania woman, frustrated by the snags and snafus of healthcare.gov, turned to the website of Independence Blue Cross, the biggest insurance carrier in Southeastern Pennsylvania, to make sense of her health insurance choices...
Twitter has figured prominently in the heated discussion about Emma and Bill Keller's respective editorials about Lisa Bonchek Adams. I have followed Lisa for a long time and greatly admire her thoughtful, highly personal tweets about the ups and downs of what it takes for her to face the challenges of metastatic breast cancer. In comparison, I am a different type of tweeter, posting a weekday stream of tweets aimed at addressing generally the subject that Lisa talks about so personally: finding and making the best possible use of health care...
What exactly is primary care? There have been a number of news stories lately that point to shifts in its traditional definitions and in what patients can (or should) expect to receive from primary care providers...
I am all for transparency when it comes to health care. So when Medicare announced a few weeks ago that it would begin to tell the public how much doctors are paid to treat Medicare patients, my first thought was "hooray." Still, I keep returning to the question: What will the data do for the average person?...
I've always assumed that the best way to find a new doctor or specialist – preferably within my health plan – was to rely on the advice of a doctor whom I know and trust, who knows my health history and understands what kind of expertise my condition requires. Recently, I have come to question that assumption...
Ever get confused over the names of medicines? I do. There's Zantac. And Xanax. Zanaflex; Zaleplon. Every drug has (at least) two names – this is a recipe for disaster...
During my senior year in college, with medical school acceptance letter in hand, I was diagnosed with metastatic testicular cancer. Early in my treatment I received a letter that my health insurance had been exhausted and I would no longer receive any health benefits. Needless to say, this was a problem...
Survey after survey finds that we are concerned about the privacy of our health and health care information. But most of us are confused about what this actually means. We struggle to imagine the range of scenarios in which we lack or lose privacy. And responses from health care stakeholders don't bode well for any real institutional or commercial investment in ensuring that our information is secure...
A couple weeks ago, the Medicare Rights Center, a well-known New York-based advocacy group, released a report card showing that seniors on Medicare are struggling to pay for their health care. This finding brings up an important question: Why aren't seniors using the variety of state and federal programs that have been set up to help people in this situation?
It looks like an airport lounge without the rolling suitcases. There are about 20 of us fiddling with our phones or reading the newspaper, waiting to meet with our doctor for follow-up or monitoring visits. All of us are between the ages of 20 and 70 and all of us are dressed for success – or at least for our jobs. What's wrong with this picture? Why are employed adults spending a busy Wednesday morning waiting (and waiting) for our health care appointment when we should be working?
The $800 bottle of meds in my bathroom cabinet is a powerfully expensive reminder of my (former) family physician's lapse in attention – and my own lapse in catching her error. She'd somehow accidentally doubled both the dosage and the number of times per day to take these meds. How is this even possible? Somebody is not paying attention...
Seniors are starting to realize that fewer doctors and hospitals may be available to them if they select a Medicare Advantage plan. Restricting these choices – in theory – is a way to control the price of health care. There's just one problem: Consumers still want to choose their doctors or stick with the ones they've got...
The idea that knowing the price of our care will encourage us to act like wise consumers is a hugely popular topic on blogs, in editorials and in the news. But relying on access to price information to drive changes in our health care choices is full of false promises to both us and to those who think that by merely knowing the price, we will choose cheaper, better care...
Most days, I have learned to function pretty well. But take a few unexpected health challenges, no matter how minor they may seem to others, arriving at the same time and piled onto an already-full plate and you have an explosion of overwhelm that looms larger than the average healthy person could even imagine. I've become a non-compliant patient...
The Obama administration and Affordable Care Act supporters have not bothered to explain how the law includes cross-subsidization, missing an opportunity to talk about the "we" aspects of the law. As one 58-year-old woman put it: "The chances of me having a child at this age is zero. Why do I have to pay an additional $5,000 a year for coverage that I will never, ever need?" Here's how it works...
The Prepared Patient Blog published over two hundred articles in 2013 about what it takes for people to get the most from health care and how the system can be improved to make it feasible for us to do so. Here's a recap of what engagement looks like to us – whether we are sick or well, whether we are caregivers or loved ones: Engagement is not easy and we can't do it alone. Patient engagement is not the same as compliance. It is not a cost-cutting strategy, and it is not one-size-fits-all.
Is it our job alone to look after our health? Or do employers, insurers, for-profit companies and the government also share some responsibility to keep us healthy? One person's nanny state is another's public health salvation. There is no shortage of examples of opposing perspectives...
Shoppers searching the Internet for health insurance coverage can be forgiven if they are confused.
National conferences aimed at solving the problem of our wide-scale non-adherence to prescription medications feature expert reports about our misbehavior and bewail the huge number of us who fail to adhere to the ideal schedule. Then each conference gives plenty of airtime to more experts describing smart pill bottles, apps that nag at us, and how patient communities can provide important information about our drugs since our clinicians rarely do. Enough with blaming patients for our approach to taking our (many) medications...
At my six-month checkup yesterday all was routine, other than my blood pressure being 131 over something when it's usually in the 115 range. Ten years ago I wouldn't have shared my fears at all, but thanks to early-stage breast cancer it's hard for my mind not to immediately go to the worst-case scenario...
We have all heard the term patient-centered medicine by now. It's in the PR materials for hospitals, in the Affordable Care Act, in health care model innovations like the "medical home" and the "accountable care organization." But what is it? What would you like to see in a health system that is truly patient-centered?
Opponents of health care reform, especially those who resist moving to a single payer system like Canada’s, have often used a very powerful argument to sway public opinion. Any significant changes, they warn, to America's private insurance system would mean that the government will come between patients and their doctors by making decisions about the care Americans receive. But what if it's not the government that is inserting itself between you and your doctor?
There's a pesky cognitive bias that creates a honking big barrier to patients and families making the most of the health advice and services available to us. It's the tendency of experts to overestimate the knowledge of others. Given my current, frequent brushes with health care, I experience this all the time: "Just go to the lab and ask them," I'm told by my chemo nurse. I think: Huh? What lab? Where? Ask who? The effects of health stakeholders' overestimation of our knowledge are profound...
The stories told by people with Alzheimer's can teach us a lot about their lives. They also help us find important topics to discuss when we visit, which can make our visits far more pleasant and meaningful to the person we're seeing...
I recently had breakfast with an aging cousin, Walter, who has become infirm in his senior years. I knew he had several doctors and took medicine. It wasn't until breakfast time, however, that I realized how many medicines Walter took – and I was bowled over...
By now it's hardly a secret that insurance companies have canceled the policies of millions of Americans whose old coverage did not comply with new benefit requirements of the Affordable Care Act. But after hearing all the backlash and requiring people to buy newer and, in the eyes of ACA supporters, better policies, the administration took another U-turn and changed the rules once again...
I'm impressed with the health care that is now available to treat diseases that – even a decade ago – were a death sentence. And I'm so very grateful for them. But we and our doctors and nurses often overlook just how much the success of these tools depend on our active, informed participation. And many of us don't fully understand what it takes to participate well in our care...
My husband has been in the hospital 14 times over the past 24 years. What I've learned is that my role as advocate is just as important to his recovery as the roles of doctors and the nurses. You may not have a medical degree, but you have intelligence and instincts...
The hockey-stick growth of "wearable technology" seen at the 2014 Consumer Electronics Show begs the question: Will people pay out-of-pocket for gadgets that help them measure their steps, track their sleep, quantify their calories, record their heart rate and feedback their mood? A caveat emptor to investors seeing short-term dollar signs in the digital health sector...
Most professional health care stakeholders believe that the more we patients and caregivers know about our health and diseases, the better our outcomes will be. When faced with the facts about our health risks and dangerous habits, they think we will rationally change our behaviors and correct our misunderstandings. As a patient, I want to know: At what point do I know enough to reap these hypothetical benefits?
"I walked in a person, and out a cancer patient," my dad said as we filed home. Crossing this threshold, we found ourselves on the other side of medicine – the side on the exam table or gurney, as opposed to the one standing over it. In time, it became clear we were running out of money...
In boxing terms, this is completely literal, sound advice. As a figurative metaphor for illness, it's not bad, either. Because no matter how competent, how smart, how resourceful we may think we are before a catastrophic health crisis strikes, many of us may suddenly feel incompetent, ignorant and helpless when thrust inexplicably into the stress of such formidable reality...
It is common for those who work in and deliver health care to overestimate our knowledge about our bodies, our illnesses and how the health care system works. Such as: Who is the nurse practitioner? Where is Dr. X's office? When is "soon"? Why are you recommending this test? To help people find good health care and make the most of it, the following video explains two key things to ask when making your appointment and three questions to get answered before you leave your doctor's office...
My patient, Mary, was a 28-year-old woman who had completed chemotherapy for stage II breast cancer. After discussing surveillance, frequency of follow-up and ASCO guidelines, I recommended against further testing or imaging. Mary was well aware of the evidence, but she had different plans...
A few days before the recent deadline for Obamacare sign-ups, I visited with one of the exchange navigators in Colorado, a state that expanded its Medicaid program and is working hard to enroll uninsured residents. This visit got me thinking of the millions of other people who live in states where they can't get access to Obamacare because they are too poor and yet are also not eligible for Medicaid...
If there is a population in which we have the biggest opportunity to see improvements in both cost and quality of care outcomes, it is older Americans. The debate on how best to deliver effective primary care has gone on a long time, sometimes frustratingly so, but it has almost never included a crucial constituency: older adults. The John A. Hartford Foundation is pleased to help change that...
As the health care system changes in the coming years, one particular trend that will negatively impact consumers' out-of-pocket costs is the use of co-insurance (instead of a co-pay) for expensive specialty medications. Approximately 57 million Americans rely on these drugs to maintain their health, and it is disheartening to learn that many people are suffering because their medications have become too expensive...
I don't know if it's growing older, or New England winters, or the meds I take, or watching Homeland and Downton Abbey in the same week – but my memory isn't as crisp as it used to be. My partner, Richard, has become part of my cerebral cortex...
Yes, there are some data-fan, quantified-patient types out there. But most of us are not enamored of monitoring bits and bytes of our biophysical functioning. So perhaps we can turn our attention toward patients' more immediate concerns of having the right information at the right time in order to care for ourselves and those we love...
A couple weeks ago, the Obama administration handed sellers of Medicare Advantage plans an increase in government payments for next year. While this may seem like a good thing for the 16 million beneficiaries who have MA plans, it may not be good for Medicare as a whole.
The word "management" raises images of organizational charts and neat project timelines. This bears no relationship to my experience of trying to live a full, rich life with serious chronic disease. My image of having a serious chronic disease is of a cowboy riding a rodeo bull. You call that management? No. But it gives you a pretty good idea of what it feels like to have a serious chronic disease. This is our experience...
A recent clumsy mishap at the gym landed me in the emergency department. Lying in the hall, feeling hapless and helpless, I was in no position to make any important health decisions, had they been needed, or to remember anything important that might have been said. Later, I understood on a deeply personal level the need for a patient advocate...
One in every five older Americans takes medications that work against each other. And some interactions between prescription drugs and supplements can pose dangerous health risks. So what must we do to make sure that we benefit from the drugs we take?
Are insurance companies making more decisions about the health care you receive? I received a letter from Aetna, my Medicare supplement insurance carrier, advertising a pitch for getting "started on a healthier lifestyle." "Because of your health history, we think you might benefit from joining our program," the letter read. Annoyed, I called the insurer...
At a recent conference about patient engagement in health care, the word "dignity" was used over 50 times in the first 90 minutes, and I was left with a little pile of meaningless sound where I had expected to find something important. Since then, I have been on hyper-alert for "dignity"...
If something is medically useless, does it still have value if it gives the patient (and perhaps the clinician as well) some peace of mind? To many patients, this is no small thing. Unfortunately, it's also often abetted by consumer marketing that plays up the peace-of-mind aspect of certain tests while remaining silent about the limited benefit, the possible risk and the clinical complexity that may be part of the larger picture...
How do we know which search results are true and which ones aren't? While you can find high-quality health information online, search results related to nutrition, fitness and preventive health vary widely in quality. And the actions we take (or don't take) as a result of the information we find can be hazardous...
"All patients are alike. This one complains about the same things that the last one did." "Every patient is unique. We can never find a way to make each one of them happy." This public health paradox is alive and well today, particularly when trying to improve outcomes attributable to patient engagement. The question is, what aspects of care need to be customized to individual needs and what can be delivered in a standardized fashion to all of us?
Bewildered, panicked and disheartened, I watched my mother's eyes dart back and forth as she read the pharmacy's prescription cash price list, knowing she could not possibly afford her monthly medicines. We drove home, not saying a word, but I knew she was deeply distraught. When we arrived, she began cutting each tiny elliptical or rounded tablet into halves and quarters...
Unfortunately, the nitty gritty of getting good care is not really newsworthy, unless we're talking about how poor it is. However, there are opportunities for journalists and writers to report "news you can use" that would be very helpful to many people, and there is a big gap in reporting on most of these necessary tasks...
When I was discharged from the intensive care unit in cardiology, not one of the nurses, residents or cardiologists asked if I'd be able to afford the fistful of expensive new cardiac meds I'd been prescribed. Not one asked if there was anybody at home to help take care of me there, or if there was anybody at home who needed me to take care of them. Not one asked if I'd be returning to a high-stress job, or even if I had enough banked sick time or vacation days to take sufficient time off. Such real-life issues are simply not the concern of most of our health care providers...
Carole Hemmelgarn is a hero. In the video that follows, Carole poignantly shares her daughter Alyssa's story, and why their family's loss has been the driving force behind the change Carole is fighting for: the delivery of safer care for all patients and families...
Recently, a friend commented that she was not sure whether or not to agree to a DNR order for her 90-year-old mother. Complicating her decision was the knowledge that her mother had chosen a DNR status when she was cognitively intact, but then reversed her decision at the time of acute illness, believing that DNR meant she would not receive vigorous medical treatment. This is incorrect, and physicians are confused as well...
I have offered before a few reasons for eligible patients to consider not getting screened for lung cancer. I concede, however, that reasonable people might conclude that the potential harms are outweighed by the benefit of reducing one's risk of dying by one-fifth. The next critical question that needs to be asked is: one-fifth of what?
What does it means to be an "engaged" patient in the VA system today? It seems you have to know a senator who will intervene on your behalf, to give your health care a priority higher than his other constituents. This is deeply discomforting, and I hate that I am treated in a health care system where even those who are most accountable for the quality of the care it provides (the institutional leaders) can't trust the institution or the professionals who work there to routinely and uniformly deliver excellent care...
I am wheeled into the operating room and walked to the bed. As I get to the table I am so cold and nervous, I begin to shake. I lay down on the operating table, thinking it seems very narrow and hoping I don't fall off. I hear one of the nurses say, "We have the Heparin ready for the new port." I freeze. I lift my head and say, "I'm allergic to Heparin." The anesthesia I've been given kicks in at that point and I drift off to sleep, hoping things go all right...
For years, my colleagues on the Prepared Patient site have preached the importance of being an advocate for your own care. And they've noted that at times it is necessary to push back against doctors' recommendations if a suggested treatment does not seem right. I just returned from a visit to the U.K., which drove home the importance of that advice...
Media-fueled flip-flops and research breakthroughs on lifestyle and health behaviors are wearing down my usual patience with the provisional nature of science. Even simple dietary recommendations like lower fat/salt recommendations have become complicated as old truisms are overturned by new evidence. So I'm asking: To whom should I turn for meaningful guidance about modifying my risk for illness and boosting my health?
To those of us who have had a loved one succumb to cancer, who had to negotiate the frightening choice between the rock and the hard place, always holding out hope for another round of chemo...we know that reining in health care costs will mean more than just raising co-pays and lowering drug costs and funding more effective interventions. It will also mean quashing hope. And learning to tell ourselves the truth...
Are we finally doing something about the high prices of prescription drugs? Maybe. At the end of May, the Washington-based National Coalition on Health Care launched "Sustainable Rx Pricing," a campaign to "spark a national dialogue" about the high cost of drugs. Will it work?
I'm impressed by how much we struggle with seemingly simple health decisions when faced with sorting through too much information. Every week we view diverse arrays of products with health, convenience and cosmetic claims competing for our attention. Think yogurt, Gatorade, running shoes, breakfast cereal...Given the ubiquity of such products and the swirl of marketing and science- or non-science-based information surrounding each, I'm wondering three things...
We've watched it many times on television or in a movie: The patient lies in the intensive care unit, gravely ill, with the family at the bedside. The doctor walks into the room and asks, "What do you want us to do?" and opens up a huge can of worms that is, in fact, ethically incorrect. The first priority that a physician has is to their patient...
Never before have I seen such intense interest from the press about health insurance rates, normally considered a snoozer of a story. For the public, this may be a good thing. If the stories are done well, consumers might learn something about the mix of factors that go into determining the premiums they will pay. But in the last couple of weeks, some stories have been downright misleading...
"All your Prepared Patient essays do is complain about your health care and your doctors. That's why I don't read them." Yowzah! Do I really complain? Not to be defensive, but I don't think so. Every week I work to vividly describe insights that might shine a little light on this project that patients, caregivers, clinicians and policymakers – well, the list goes on – share of trying to make health care more effective and fair...
Should you bring someone with you to your next doctor's appointment? If you're asking, the answer is yes. If you're asked, how do you be the best companion? Prep in advance, listen, record and ask questions. Know why you're going. That means two things...
For ages we've all known that the U.S. health insurance system works splendidly for those who have good employer-provided coverage, slide smoothly into Medicare when the time comes and seldom get sick. But evidence is beginning to trickle in that this seamless pathway for some people who've signed up for Obamacare insurance may be more illusory than real...
What is patient engagement and what does it take to accomplish? With the support of the Robert Wood Johnson Foundation, CFAH set out to explore this concept as it was viewed by various diverse stakeholders. Our interviews with 35 key health care stakeholders lead to an impressive unity of opinion...
As the former chief of medical affairs of UnitedHealth Group, I'm privileged to listen to the good people of this country talk about their health care. When it comes to choosing a doctor, do you know what I've learned? Most of us spend more time researching our next electronic gadget than researching our doctor. Except choosing the right doctor has significantly more impact on your life than any gadget...
The ED is convenient, it's open 24 hours, it does not require an appointment. So when the stomach bug or kitchen accident gets the best of you at 9:00 pm, and your doctor's office is closed, where are you going to go? And, yet, we still chide people – via reporting, casual comments and the communication of health systems – for using the ED for "non-emergent" needs. What I'd like to see is more hospitals flinging open the doors of their EDs and saying, "We'll take you, any time, for any reason, and you won't wait long or pay an arm and a leg"...
Insurance companies and a group of senators headed by Alaska Democrat Mark Begich think they have a great idea for getting more young people to sign up for health insurance...
"Being engaged in our health and health care makes the most difference to us as individuals. Our actions need to reflect our own goals, our values and preferences, and what we are willing and able to do to achieve them," says Rushika Fernandopulle, MD, Co-Founder and CEO of Iora Health.
I was one of the patients interviewed for the recently published Center for Advancing Health report called "Here to Stay: What Health Care Leaders Say About Patient Engagement". It's an interesting, illuminating and frustrating document to read. My concern, as a person who's pretty darned engaged in my own health care, is not that the phrase is meaningless. It's more that non-patients have co-opted the concept of patient engagement for their own purposes...
We go to the hospital to get better, right? But it doesn't always work that way. Sometimes patients become sicker, not because their illnesses are untreatable, but because deadly bugs can overtake a hospital's ecosystem and wreak havoc, especially among the most ill. Not long ago, this happened to my husband...
In the late 1990s, when the Institute of Medicine released their landmark Quality Chasm report saying that patients "should be given the necessary information and the opportunity to exercise the degree of control they choose over health care decisions that affect them," I don't think this is what they had in mind...
"When I think of patient engagement, I think of a partnership where people work together to figure out what the patient wants and how to support the process. Engagement is the knowledge base, working through the decisions and helping people to become full partners in their health outcomes." – June Simmons, MSW — Founding President and CEO, Partners in Care Foundation, San Fernando, CA
You need a refill for a prescription that's about to run out. You've taken the medication for years without any problems and can't think of any reason why the prescription can't just be automatically continued. But the doctor won't order a refill unless you make an appointment and come in to be seen. Is this an unfair burden on the patient or due diligence by the doctor?...
A mother takes her teenage son to an urgent care center that is part of her insurance plan's network. A clerk quickly refers him to the emergency room, across the street, which just happens to be part of the same hospital system as the urgent care center. Is this UCC sending some patients to its related hospital ER, clearly a place of high-priced care, to gin up revenue for the system's bottom line?...
Receiving bad health news can spark great upheaval. It is a time when nothing is certain and the future looks dark. The new, free app 'AfterShock: Facing a Serious Diagnosis' offers a basic roadmap through the first few days and weeks, providing concise information and trusted resources to help you regain a bit of control during this turbulent time...
I just got off the phone with a very upset patient who discovered that her pharmacy has been giving her the wrong medication for the past five months. Despite all our fancy technology and advances in health care, medication errors can and will occur. So what can you do, as a patient, to be sure that your prescriptions are correct?...
The privacy issues around data flowing out of credit card swipes, social network check-ins, digital health trackers' apps and smartphone GPS geo-location functions are thorny, especially for health – where HIPAA protections don't extend. Here are two real and documented stories from people whose "digital dust" was collected without their knowledge...
When you ask patients what quality is most important in a physician, they often answer "empathy." I think that's close, but not quite right. I know many "nice" and "supportive" doctors who have poor clinical judgment. When it comes to excellent care quality, one personality trait stands out to me – something that we don't spend much time thinking about...
"Since patients don't live in a vacuum, we must also involve the community in which patients live, work, and play. Community resources must be readily available to meet the needs of the population they serve. Also, as we begin to have patients and families engaged in their care and talk to peers and extended family members, they begin to model engagement to others. We are looking for 'engaged communities.'" - Jean Moody-Williams - Group Director, CMS Quality Improvement Group, Baltimore, MD
As I sat on a New York subway one sizzler of a day, an ad for an ice cream cone grabbed my attention. After a closer read, I realized the ad was not touting ice cream but the Center for Advanced Digestive Care, a part of New York Presbyterian, one of the city's most prestigious hospitals and well known for its TV ads designed to cultivate brand recognition. The ice cream cone was an effective attention-grabber. So was the message…
One thing seems to be sure in medicine: if we just wait long enough for excellent science to guide us ahead, things we trust as ironclad rules often change. Case in point...
"Most health plans view engagement as important and want to support it. But they recognize that they are only one (relatively weak) factor in supporting patient/consumer engagement... Their customers want their insurance premiums going to medical care, not a bunch of mailings about things they already know they should do..." – Arthur Southam, MD – Executive Vice President of Health Plan Operations, Kaiser Foundation Health Plan, Oakland, CA
That the government overpays sellers of Medicare Advantage plans is well known in Beltway circles, even if much of the public remains unaware…
My new doctor and I clashed in every way. The short story is that I found another doctor who was a better fit for my "patient style." So what can you learn from my experience? First off, here are two questions you should ask yourself...
Recently the Department of Health and Human Services proposed that most of the federal health exchange policyholders be automatically re-enrolled next year in the same policy offered by the same company. That's right, no shopping around...
"There's a prevailing attitude on the side of clinicians that looking for and using [our own] information is not good behavior on our parts. I think that attitude is a big barrier; people don't want to be seen as troublemakers for asking too many questions, disagreeing with a clinician, or bringing information to the table." – Kelly Young – Patient Advocate, President of the Rheumatoid Patient Foundation, and Founder of Rheumatoid Arthritis Warrior blog
Not long ago, the only options my patients had for communicating with me were to come in to the office or relay a message through the office staff. But since recently introducing the patient portal in our electronic medical record, my practice has changed substantially for the better...
What's the best way to choose a new doctor? We can ask friends, family, or our current doctor for a referral. We can pick the provider who's closest to our home or office. We can look them up online and read their reviews. But research finds that online physician ratings are far from perfect...
I am writing this post while seated comfortably in a motorized leather recliner with a window view and lots of other perks. What a legacy we would leave Saskatchewan citizens if we could figure out how to extend this first-class patient care to all patients and their families wrestling with chronic disease...
"Reality is the leading cause of stress among those in touch with it," Lily Tomlin once quipped. So it's no surprise, then, that one-half of the people in the U.S. have had a major stressful event or experience in the last year. And health tops the list...
Just a few years ago it seemed that advocates for health care transparency had scored a big victory. The Centers for Medicare and Medicaid Services (CMS) announced that they would rate nursing homes by awarding five stars to the best and fewer stars to lower-quality facilities. It turns out, though, that five-star nursing homes may not be delivering five-star quality...
"At the end of the day, there is a growing recognition that we need people to take better care of themselves. Too much money is being spent on the consequences of unhealthy choices and on health care. We don't think that patient engagement is just the flavor of the week. The concept of how we can take more responsibility for our health and health care is not going away." – Janice Prochaska, PhD, President and CEO of Pro-Change Behavior Systems in South Kingstown, RI
Checklists are routine in other professions to standardize management, and we know they can prevent hospital infections and surgical error. But can there be a downside to checklist medical care? Consider these two examples...
My 77-year-old parents were recently impacted by a medical error. The good news is that the story ends happily. The bad news is that it could have been averted simply by checking the date on lab tests...
American health care has become a gigantic game board with players of all sorts strategizing to win. Winning, of course, means getting more money from payers...
Jessie Gruman's Viewpoint article in the July 2014 issue of the American Journal of Nursing reflected many of the thoughts and experiences I have had as a parish nurse. "Discharge planning should start on the day of admission" is something that every nurse has heard, but I don't think I have seen that in practice at all!
As we head into health insurance enrollment season, which opens in November, consumers/patients will face yet another challenge in selecting the best health plan...
It's truly a dilemma for the doctor. The patient's test results are back and the news isn't good. But it's Friday afternoon and there's a decision to make: Call the patient now or wait until Monday?
My friend Jane is quite a perfectionist, at least usually. I was almost certain that if she was having work done on her kitchen, she would be getting competitive bids, asking for references and reviewing vendors. But not for her shoulder surgery. Perhaps we need a concise mantra for what it means to be a health care consumer...
I recently spoke with a gentleman with a significant illness whose main goal is to stay home. He decided to utilize our skilled home health services and home medical equipment. Over time, he transitioned into our palliative care program and currently is in our hospice program. Here is information on what these services are and who may benefit from them...
A friend of mine suddenly learned the importance of patient engagement a few weeks ago when a matter affecting his pocketbook grabbed his attention. For the last several years the mantra has been "buy generics" as a way to lower the cost of drugs for consumers but also for the nation. For a while insurers did that. Not anymore...
I have complicated feelings about prescribing for chronic pain. On one hand, I recognize that relieving headaches, backaches, arthritis and nerve pain has been a core responsibility of the medical profession for ages. On the other hand, deaths and emergency room visits from overdoses of prescription painkillers have skyrocketed. I believe that addiction is a disease. So why do I find my patient's lies so hard to forgive?...
I have just done something I said I would never do: shop for a Medicare Advantage plan to cover my gaps in Medicare. The usual flyers and brochures from sellers of Medicare Advantage plans began to arrive in the mail with their enticing sales pitches, and one nearly fooled me. Short of having a Medicare representative on the phone, you're stuck in an information swamp. No wonder studies show that beneficiaries are not eager to shop around even if they can get a new policy with a smaller monthly premium...
Ninety-one percent of doctors are concerned about giving patients access to their detailed electronic health records, anticipating patients will feel anxious about the results. Only 34 percent of consumers are concerned about anxiety-due-to-EHR-exposure. Welcome to the digital health chasm, the gap between what consumers want out of digital health and what doctors believe patients can handle...
Many cancer therapies now cost over $100,000 a year. Obviously, this expenditure is not sustainable for the majority of patients. At age 64, I am approaching Medicare coverage. Will I have the 20 percent co-pay to shoulder? As more people survive cancer and remain on ongoing medicines, the U.S. has to have a fair and open discussion about the cost of these medicines...
A new report, "The Politics of Patient Harm: Medical Error and the Safest Congressional Districts," is an alarming reminder that the 200,000 or more preventable medical errors in U.S. hospitals remain stubbornly high and dangerously under-addressed. In early 2013, CFAH's founder and president, the late Jessie Gruman, challenged readers about the crisis: "It is needlessly killing a lot of people and those who have the responsibility to stop it have not made meaningful progress... Are you outraged? If not, why?"...
As patients we want an answer and a treatment – if not a cure – for what ails us. But sometimes the doctor doesn't know what's wrong, which isn't as rare as we might think. All too often, patients or their families must take charge of their own medical management. Doctors, after all, are human, and some are better diagnosticians than others. Here are some things to do if you or a loved one is struggling with an undiagnosed condition...
We'd all like to believe that the average physician would have some clue about a medical crisis happening within a family she's been caring for during the past three decades. But it ain't necessarily so. If you've ever been discharged from a hospital by one doctor only to later be readmitted to the hospital under a different doctor's care, you may be surprised to learn that those doctors are not likely talking to each other...
As narrower insurance networks begin to limit where we can get our care and contradict the American notion of abundant choices, I thought about the Canadian health care system and rumors of its long waiting lists that grab U.S. headlines. Yet, narrow insurance networks, sky-high deductibles, co-insurance and co-pays are ways of controlling our medical expenditures. Instead of rationing with waiting lists, America rations with price...
Should you trust your doctor? Absolutely. But you need to serve as a spirited advocate for your own health or bring one with you. And most importantly, try as best as you can to verify that the proposed solution is targeted to your problem...
Why are patients sometimes less than forthcoming? The top reason, according to a new survey, is fear of being lectured or feeling embarrassed. If doctors want their patients to be honest, they need to make an effort of their own to create a trusting, non-threatening environment that encourages patients to open up...
When choosing a hospital, pay little attention to advertisements, testimonials from sick patients, boosterish stories based on press releases, or wisdom-of-the-crowd comments you find on consumer rating websites. Look for reports that measure a hospital's quality – only these can offer clues to the kind of care you might get...
I am a pharmacy student and was recently sent home with a prescription to treat a very painful earache. I do not recall the name of the medication, but I do remember my reaction when I went to pick it up. I was shocked that the drug would cost me over two hundred dollars! I could not afford the medication, so I went home without it...
The first blog post I wrote about a Canadian doctor who was "diagnosing poverty" received more than 3,000 hits. I wanted to circle back to see whether or not the program had taken root. Indeed it has. "It's been a wildfire effect," Dr. Gary Bloch told me. Why can't the U.S. follow suit?...
Imagine, for a moment, if we expected passengers to "have a dialogue" with airline pilots prior to a flight. Is this something we'd consider admirably "passenger-centered?" What about "patient empowerment" materials which ask patients to confront caregivers who don't wash their hands? It's a bad turn of events when we ask patients to ask providers to avoid dirty hands and unnecessary care...
If clinicians are to fully embrace and succeed with value-based payment and population health, it is crucial that they incorporate patient-generated data into EHRs to build a more complete picture of a patient’s life outside of the doctor’s office, at home, where she “lives, works, plays, and learns”. But new research from PwC’s Health Research Institute has found there is a big difference between what doctors and patients think about the self-care concept...
"People who teach about population health underscore relatively few important areas that are powerful determinants of health: eating, moving, sleeping, smoking and stress. Paying attention to these things can go a long way towards maximizing health and could dramatically reduce health care expenditures in the bargain. But it's hard to change behaviors, and cultural changes will only come slowly." – Dr. Todd Sorensen, CEO of Regional West Medical Center, Nebraska
More than 44 percent of Americans regularly take a prescription drug. And according to the 2013 Consumer Reports Best Buy Drugs Prescription Drug Tracking Poll, 57 percent of people reported taking steps in the last year – some of them potentially dangerous – to curb high medication costs: not filling a prescription, skipping a scheduled dose, and taking an expired medication. Why? And what can be done to help?
Four years ago, I began writing Prepared Patient
posts that dissected the health care marketplace, questioned health care's conventional wisdom and assumptions, and uncovered contradictions in the Affordable Care Act and consumer-is-king theories of health care. The collection of 147 posts describes a health care system that still needs consumer scrutiny and skepticism if the goal of being a prepared patient is to be realized...
In general, today's patients are taking more medications for a multitude of ailments. Even for the most astute patients, keeping track of doses and regimens can be a challenge. Add in changes in color and appearance of chronic medications and the task can often be overwhelming, especially for elderly patients with cognitive decline. We must look for alternative ways to assist our patients with managing their disease while at home. I believe technology is the answer...
Receiving bad health news can spark great upheaval. It is a time when nothing seems certain and the future may look dark. Since its release this summer, the free AfterShock: Facing a Serious Diagnosis app has provided users with a basic roadmap through the first few days and weeks after a serious diagnosis, providing concise information and trusted resources to help regain a bit of control during this turbulent time. As one reviewer wrote, the AfterShock
app is "a standard for empowered patients"...
Jessie defined patient engagement as "the actions we take to support our health and to benefit from health care." As I reflect on this, I see that we have come to a crossroads. Jessie can no longer lead us and the organization she formed, CFAH, will soon cease. Now is the time for us to let our voices continue the discussion and to push the patient engagement agenda forward. Are we ready?...
In July, CFAH released its final report on the state of patient engagement in the U.S., Here to Stay: What Health Care Leaders Say about Patient Engagement
, a collection of interviews with 35 key informants from seven groups with an interest in patient engagement. We asked health care leaders to define patient engagement, explore its impact and barriers, and share promising interventions. Six key themes emerged from our discussions...
Jessie Gruman founded the Center for Advancing Health in 1992 and served as president until her death in 2014. After over 20 years under her remarkable leadership, CFAH ended operations in December 2014. This post was Jessie's final essay announcing the release of CFAH’s last patient engagement research report and sharing some personal reflections on her career...