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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.
When I first learned of the primary care medical home model it seemed to offer a great solution to medical homelessness a sort of permanent doctor-patient renter status, where both parties are bouncing around without a foundation, without a community and where a certain uncertainty exists and miscommunications and disorganization prevail.
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 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.
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.
Last week The New York Times published a front-page feature about how diagnosing breast cancer can be surprisingly difficult, prone to both outright error and case-by-case disagreement over whether a cluster of cells is benign or malignant.
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.
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...
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.
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.
I have stomach cancer and will undergo surgery to remove part or all of my stomach today.
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.
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.
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.
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.
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.
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.
A recent front-page article in the New York Times conveyed grim news about patient safety. The first large-scale study of hospital safety in a decade concluded that care has not gotten significantly safer since the Institute of Medicine's 1999 estimate of up to 98,000 preventable deaths and 1 million preventable injuries annually.
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.
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.
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.
The rapid changeover from traditional mammography'pictures taken with film'to the new digital imaging technology poses a thorny dilemma for women, especially those over 65. The scientific evidence suggests that digital mammography does not improve the detection of breast cancer in older women.
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.
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.
A TIME article this week reveals new research that 'doctors who are more empathetic actually have healthier patients.' More on empathy and its role in health outcomes.....
According to American Medical News, the U.S. health system is demonstrating better performance on most measures of health care quality, but it's failing to improve access to care or cut racial and ethnic health disparities.
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?
"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.
Nora misjudged the height of the stair outside the restaurant, stepped down too hard, jammed her knee and tore her meniscus. Not that we knew this at the time. All we knew then was that she was howling from the pain. There we were on a dark, empty, wet street in lower Manhattan, not a cab in sight, with a wailing, immobile woman. What to do? Call 911? Find a cab to take her home and contact her primary care doctor for advice? Take her home, put ice on her knee, feed her Advil and call her doctor in the morning?
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.
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.
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.
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.
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.
"There is a better way - structural reforms that empower patients with greater choices and increase the role of competition in the health-care marketplace." Rep. Paul Ryan (R-WI) August 3, 2011
. 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.
Recent pieces at HealthNewsReview Blog and in the Washington Post highlight the need for accessible and reliable information about health care services.
Word comes from Nature News that the NIH is dropping a proposed requirement for universities to disclose researchers' financial ties to industry on websites. This is a loss for patients, who may not be aware of their doctors' relationships with pharmaceutical companies and others who fund clinical trials, fellowships, conference junkets and other perks for physicians.
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.
How do you calibrate care so that it is neither too much nor too little? In this collection of recent posts, health care professionals search for that 'just right' level of care.
With almost a decade's worth of the National Healthcare Disparities Reports behind us, it is clear that addressing disparities defies simplistic solutions. As we all believe that the complexity of cancer, cardiovascular diseases and HIV/AIDS will not stop us from one day finding a cure, I firmly believe that this same tenacity of spirit is needed to successfully surmount the challenges of disparities.
This interview with Dale Shaller is the first in a series of brief chats between CFAH president and founder, Jessie Gruman and experts - our CFAH William Ziff Fellows - who have devoted their careers to understanding and encouraging people's engagement in their health and health care.
This interview with Connie Davis is the second in a series of brief chats between CFAH president and founder, Jessie Gruman and experts - our CFAH William Ziff Fellows - who have devoted their careers to understanding and encouraging people's engagement in their health and health care.
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.
This interview with Molly Mettler is the third in a series of brief chats between CFAH president and founder, Jessie Gruman and experts - our CFAH William Ziff Fellows - who have devoted their careers to understanding and encouraging people's engagement in their health and health care.
This interview with David Sobel is the fourth in a series of brief chats between CFAH president and founder, Jessie Gruman and experts - our CFAH William Ziff Fellows - who have devoted their careers to understanding and encouraging people's engagement in their health and health care.
This interview with Kate Lorig is the fifth in a series of brief chats between CFAH president and founder, Jessie Gruman and experts - our CFAH William Ziff Fellows - who have devoted their careers to understanding and encouraging people's engagement in their health and health care.
This interview with Shoshanna Sofaer is the sixth in a series of brief chats between CFAH president and founder, Jessie Gruman and experts - our CFAH William Ziff Fellows - who have devoted their careers to understanding and encouraging people's engagement in their health and health care.
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.
This interview with Trudy Lieberman is the ninth and final of a series of brief chats between CFAH president and founder, Jessie Gruman and experts - our CFAH William Ziff Fellows - who have devoted their careers to understanding and encouraging people's engagement in their health and health care.
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.
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.
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.
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.
Joan Reder, a person with diabetes, spends her days working as a medical transcriptionist, so you might assume she'd be pretty comfortable with anything involving medicine. But recently, the 59 year-old was faced with the daunting prospect of converting from her familiar daily insulin injections to an insulin pump, which would continuously monitor her blood glucose and deliver insulin to her body when needed.
This interview with Gail Hunt is the first in a series of brief chats between CFAH president and founder, Jessie Gruman, and health care experts'among them our CFAH Board of Trustees'who have devoted their careers to helping people find good health care and make the most of it.
Is the New York Giants bathroom more sanitary than your hospital room? Could be. And that player cleanliness may even have helped send the team to the Super Bowl.
Most people still assume that they don't need to worry about the quality of the care they receive, whether it is from a doctor, in a hospital or in a nursing home. It's pretty frightening to realize that you do have to care about it, because it means you have to assume the burden. If quality does vary, you have to do the research. This is hard to deal with when you are upset.
The experience of quality health care may vary from person to person, but in this patient blog roundup, it's clear that true quality considers a person's emotional well-being and their unique circumstances.
Your parents still might be willing to do your laundry, but if you're over 18, they can't make your medical decisions. Are you ready to navigate the adult health care system? This updated Prepared Patient feature offers advice for young people who are just starting out in managing their health care, including information on important provisions from the Affordable Care Act.
Three of the things that optimal patient engagement depends on are TIME, TOOLS and TEMPERAMENT. Clinicians and patients experience each of these differently, but they are central to us working together to get the best possible outcomes.
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.
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.
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 participation of individuals and their caregivers in hospital care has taken on increasing importance for us in all our activities as we have come to realize how central those attitudes and behaviors are to the delivery of quality 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.
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?
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.
I began painting at Maine Quality Counts Partnering with Patients: Finding the Bright Spots to Transform Care. The painting is entitled 'The Trees of Maine.'
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.
I am interested in how public and private policy can make it possible for most people in this country to take good care of themselves.
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.
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.
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?
I discovered somewhat by accident early in my career -- that science makes faster progress and produces better results if more people with a range of different expertise are brought together. In the past 10 years, I've extended this belief to patients' participation in their care.
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.
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...
While the benefits of having (and keeping) a good physician may be evident, how do you find this just-right-for-you clinician?
Mailers from a New York City dentist piqued my interest last week offering zero percent financing ' the same come-on that car manufacturers have used for years to entice you to buy Chevys and Toyotas.
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.
Many of us have vivid memories of tying a thread to a loose tooth and wiggling it back and forth with our tongue all the time hoping for a profitable visit from the Tooth Fairy. Facebook is full of school and family photos of kids with cute, gap-toothed smiles. But increasingly, children are losing their baby teeth not due to the budding of their permanent teeth but to the ravages of early decay and cavities. There are a number of reasons kids and adults don't make it to the dentist regularly. For some parents, it's a lack of understanding about the importance of oral health, even at an early age.
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.
Well of course we are not all doctors. What a ludicrous statement. Just because I have changed a band-aid, taken a temperature, 'diagnosed' a headache and appropriately treated with an acetaminophen, and even clipped an in-grown toe-nail does not make me a healthcare professional.
Hospital and physician ratings and patient satisfaction scores are all inter-related. Do they provide useful, meaningful information-and will we use them?
We've all heard about well-baby visits, but if you're a healthy adult, you probably have no plan to see a doctor. When there's nothing to complain about, many of us go years without a comprehensive medical check-up, maybe to save money or time off from work or because we don't want to be lectured about our diet or exercise habits. But should we give up the time-honored tradition of the yearly physical?
Richard Heffner, host of The Open Mind on PBS, interviewed me recently about what it’s like to be a patient in the midst of changes in health care delivery, advances in information technology and the implementation of new health policies.
When it comes to customer service, retail stores, banks, airlines and hotels are tops. Health care? Not so good.
Fundamentally rethinking and refocusing on patient-centeredness is central to building a health care system that improves quality and controls cost. But patient-centeredness must permeate an organization from the 'exam room to the board room'.
After learning recently that I may need cataract surgery, it was time for me to check out the hospitals where that procedure might take place.
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.
Gail Hunt is president and CEO of the National Alliance for Caregiving and serves on the Board of Commissioners for the Center for Aging Service Technology, the Governing Board of the Patient-Centered Outcomes Research Institute (PCORI), and the CFAH Board of Trustees. This is the third in a series of interviews between CFAH President and Founder Jessie Gruman and patient and consumer group leaders about their experiences with and attitudes toward comparative effectiveness research.
If you want to know if restaurant food is safe, there's help. Just look at the signs in the window'?¦There are similar government inspection reports for hospitals, but you won't see them on the front door or any place else in the hospital, for that matter.
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.
As a patient advocate, it's always good to know what the best treatment options are for our patients. As we continue to see so much fraud in research, there is mistrust about validity of data and the research itself relative to particular at-risk communities.
When you look at what can be done to save Medicare with this growing aging population, what do you do? One of most important things to do is to quit paying for things that don't work or don't work very well.
I was interviewed, along with several other cancer survivors, for the October issue of Washingtonian Magazine. "Dealing With Cancer" by Karina Giglio, offers advice on how to choose your doctors, what websites you can trust, how to help a friend with cancer and other resources to help you or a loved one get through treatment.
Despite availability, evidence doesn't always make its way into practice. If we could implement what we know now about safe and effective maternity care, we would see rapid improvements in the quality, outcomes, and value of care for women and babies.
When asked who's to blame for the rising cost of health care, consumers accuse insurance companies and the pharmaceutical industry, virtually tied for first place. These results aren't surprising given that past surveys have found consumers perceptions of 'Big Health' = Big Health Insurance + Big Pharma, down in the trust roster along with Big Oil, Big Tobacco, and Big Food.
Easter Seals sees CER as a real opportunity for good information about treatment choices. Wanting to always be person-centered, we hope CER can inform the choices of individuals and families made in consultation with their providers but that CER will not prescribe the treatment.
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)?
It would be nice to know if a treatment is totally worthless or that there are truly horrible side effects to a treatment or that a treatment really won't help slow the disease or relieve the symptom it's aimed at.
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.
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.
We believe that CER can be a valuable strategy to improve health care'?¦We are concerned, however, that older adults have often been excluded from clinical trials of drugs, medical devices and procedures.
When we started focusing on CER, the big concern was the head-to-head trials of drugs and devices and the naive application of their findings to insurance reimbursement policies. Our ultimate fear was that access to medications would be restricted.
We need to do better if we want people to have high-quality care that is provided in a way that is safe and makes the best use of scarce health care resources. CER that is relevant, timely and rigorous is fundamental to achieving these objectives.
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.
The nation'??s hospitals are now officially on notice that the federal government is looking closely at the kind of care they give'??so closely that Medicare will be giving them a financial bonus or a penalty depending on how well they do.
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?
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?
February issue, A New Era of Patient Engagement
, selected my essay, An Accidental Tourist Finds Her Way in the Dangerous Land of Serious Illness
, for its Narrative Matters piece. In the essay, I share experiences from my latest cancer diagnosis and call for policies to support patients and families with the increased responsibilities they face to find good health care and make the most of it.
Having had one eye surgery a few months ago, I knew what to look for. But my patient experience was much different this time and made me aware of how many places in the chain of care where mistakes can occur.
The Association of Health Care Journalists (AHCJ) is making hospital inspection reports from the Centers for Medicare and Medicaid Services available at AHCJ’s new website www.Hospitalinspections.org. The site is not perfect, and there’s a lot of missing information, but still it provides some information about hospitals that has been lacking and offers a basis for asking questions.
Should nurse practitioners, RNs, physician assistants, pharmacists, social workers and others including, yes, peer patients, take up much — or even most, of doctors’ tasks?
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.
Twelve years ago, in its landmark study Crossing the Quality Chasm
, the Institute of Medicine (IOM) found that “the health care industry is plagued with overutilization of services, underutilization of services, and errors in health care practice.” In simple English, the IOM reported that health care was riddled with overuse, underuse and misuse of medical services.
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 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.
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!”
Since my last blog post where I stressed the need for our continued commitment to push the patient experience movement forward I have had a positive, life-changing experience. Early on Friday, April 19, as we were wrapping up Patient Experience Conference 2013, my wife called to let me know she was having contractions. "Nothing imminent," she calmly told me.
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?
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?
Many people rely on the internet to look up health information or find a new doctor. However, navigating through the vast amount of resources and information online can be exhausting. Doctors Kevin Pho and Kenny Lin share some tips.
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?
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...
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.
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.
It's a scene that plays out daily in exam rooms across the country. The aging patient, accompanied by a caregiver, is seeing his or her physician and a discussion starts regarding the patient's memory.
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.
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.
At Home/Chez Soi, a Canadian program for the mentally ill, is built on the concept that providing housing is the first order of business. An approach that reinforces the truism that good health is more than swallowing the latest wonder drug.
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."
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?
Perhaps like many of my age, I am not captivated by a number of much-touted technological innovations, increasing choices I don’t desire and fulfilling needs I didn’t realize I had. My nervous reaction to Personal Health System Technology is that of the distancing of patients from doctors, adding still another barrier between doctors and patients, and in the seductive name of their medical welfare.
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?...
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 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...
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...
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...
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...
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...
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 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.
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?
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'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...
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...
Dedicated to promoting behavioral medicine research and the application of that knowledge to improve the health and well-being of individuals, families, communities and populations, Society of Behavioral Medicine created this award to recognize an individual who has made a pivotal contribution to research, practice or policy in the field of health engagement.
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"...
"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...
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...
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...
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"...
"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.
"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
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...
"Employers have an opportunity to reduce barriers and support engagement because they sponsor health plans and can provide access to information, tools, technologies, incentives, and more. Employers have more ability to influence engagement than they often believe they have." – Michael Vittoria, Vice President, Corporate Benefits, MaineHealth, Portland, ME
"Jessie kept a laser focus on discovering and describing the process that she and many other patients with serious illnesses go through, so as to create useful tools and guidelines for all patients. She did it with admirable grace, humor, wit and wisdom." – Doug Kamerow, immediate past CFAH Board Chair, senior scholar at the Robert Graham Center for policy studies in primary care, and associate editor for The BMJ
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...
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...
"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
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...
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
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...
Finding good health care and making the most of it is critical for each of us. Yet all too often, reliable, unbiased information is hard to find and understand. On the redesigned Be a Prepared Patient website, we have collected trusted resources and tips to help people navigate their way through health and health care decisions and experiences...
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...
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...
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?...
"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
After over 20 years under the remarkable leadership of the late Jessie Gruman, the Center for Advancing Health is ending operations at the end of 2014. To expand on the CFAH body of work and enrich the growing interest in the field of patient engagement, the CFAH board of trustees has selected a proposal from George Washington University to establish the Center for Patient Engagement at the GW Cancer Institute. This gift was made possible by the generous contributions to the Jessie Gruman Memorial Fund.
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"...