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In a recent HBNS research news story, from a study in the journal, General Hospital Psychiatry, we reported that stigma prevents many Latinos from receiving treatment from depression. The study points out that many Latinos prefer to handle personal problems or concerns privately and may resist seeking treatment.
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.
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."
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.
Have you ever gotten one of those phone calls from your doctor the starts out I'm very concerned about what we saw in your mammogram/colonoscopy/echocardiogram?
I had been delaying this visit for awhile now in hope that whatever was growing under my tongue would heal itself. I'd already exhausted visits with a dentist and a physician assistant, but an oral surgeon just sounded so intense for what I presumed was not that big of a deal.
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!
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.
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.
A recently published study in the August issue of Archives of Internal Medicine reveals that there are significant gaps between what doctors think their patients know and what patients say they know. The findings are based on a survey of 89 patients and 43 physicians conducted between October 2008 and June 2009 at Waterbury Hospital affiliated with Yale School of Medicine. Researchers found that some of the discrepancies relate to basic information. For example, two-thirds of physicians thought patients knew their names. But only 18 percent of patients could correctly say their names.
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.
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.
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.
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.
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.
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?
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.
Deborah Lewis got a shock when her pain management clinic called about a recent MRI test: They told me I needed to see an oncologist right away, that I had tumors on my spine. An oncologist did a lot of tests even though he said the MRI report didn't indicate anywhere that I had tumors or cancer. In fact, Lewis just had benign tumors common to her chronic medical condition. After a lot of wasted money, time and a whole lot of fear, we learned to question all test results,' she says.
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.
'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.
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.
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.
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.
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.
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.
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.'
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.
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.
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.
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.
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.'
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.
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.
The women recounted how their lives had been saved as they pleaded for the Food and Drug Administration not to withdraw approval for Avastin as a treatment for advanced breast cancer. They did so even without evidence that it provides benefit and with evidence that it confers risks.
A new study shows that 21% of adult Americans delay seeking health care for reasons other than cost. In this collection, a doctor, a journalist, and a health care manager discuss the need for improved systems and candor to support better doctor-patient communication.
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.
I sit looking at the phone. I'm having a medical problem that needs attention, but I don't know who to call. Here's why...
In January 2010, after beginning treatment for chronic Lyme disease, 53-year-old Jim Young lost significant weight and struggled to breathe. Within 15 hours, his wife Erica Kosal received a call about his imminent transfer to the intensive care unit (ICU). "I can remember he was hooked up to all kind of machines. He looked so deflated.'
Erica Kosal's husband, Jim Young, has battled complications of chronic Lyme disease since his diagnosis in 2008. In 2010, Jim's hospitalization for respiratory problems took a turn for the worse, resulting in a 3-week ICU stay.
This interview with Judy Hibbard is the seventh 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.
The current literature indicates that we in the various health disciplines provide texts that are poorly written and organized, web sites that are hard to navigate, as well as charts and graphs that are difficult for many to interpret and use. I say that we can make information truly accessible and usable by adding needed rigor to our work.
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'
Delirium and dementia are not synonymous, though in elderly hospitalized patients, delirium is often overlooked or dismissed as such. Here, Nora O'Brien-Suric and Susan Seliger discuss their parents' hospital experiences with delirium, which new research shows, has dangerous implications.
Did you know that every nursing home resident in the US must be asked every quarter whether she wants to go home, regardless of her health or mental status? And if she says yes, there is a local agency that must spring into action to make that happen.
Last week I went to the family pharmacy I use in New York City to pick up a new anti-arrhythmic drug that might slow down or even stop the atrial fibrillation I had experienced for the previous two weeks. The pharmacist came from behind his privacy wall to speak with me before dispensing the drug.
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.
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.
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.
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.
I think that if people are ever going to be able to use technology to engage in their care, the technologies have to be built for them and have to be usable by them.
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.
Recently the Annals of Internal Medicine
published a new report on how doctors (don't) understand cancer screening stats. This unusual paper reveals that some primary care physicians a majority of those who completed a survey don't really get the numbers on cancer incidence, 5-year survival and mortality.
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.
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
Self-efficacy is a very important concept in health care. It is nearly the same thing as self-confidence, or a belief that you can do something, like monitor mood, change eating habits and start being more physically active. It turns out that self-efficacy is linked to hospital utilization (low confidence = increased ER visits and days in hospital), to blood sugar control (low confidence = worse blood sugar control) and to changes in behavior.
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.
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?
Whenever I am in an interaction, I know these three ideas can help shape the encounter. How is the person doing with these three tasks? What can I do to help? Are they confident in these three tasks?
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.
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.
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.
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.
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.
The words used by health professionals to describe our illness, treatment, prognosis, etc., carry weight. Which ones they choose can affect our understanding of our care and our ability to participate in it.
We're a disgruntled bunch these days. We think there must be a better way to experience health care.
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.
I was offering a drug that could help stop the cancer in its tracks; it could prolong her life. And yet, instead of taking my advice, she had rejected it. Why?
We hear inspiring things about patient engagement. The very concept has a hearty, spirited, do-right sound to it. After two years of cancer treatment, there are a few fundamental principles I think patient engagement should mirror.
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.
Physicians, hospitals and other providers are being misled by industry pundits claiming that more health information technology (as in EMRs, PHRs, Smart Phone apps, and web portals) is the key to greater patient engagement. It'??s not.
Have you ever worried about being called a difficult patient? Here, journalists, patients, and doctors discuss the "dreaded 'D' label" and why it's important to speak up.
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.
In "When Your Doctor Says, 'I Have Bad News'" I offer advice on how to cope with a scary diagnosis - without getting caught up in the chaos of fear. Written by Jon Spayde for Experience L!fe magazine’s November issue.
Patients are not opposed to comparative effectiveness research. I think they understand its value to health care decision-making. But physician-scientists and policymakers rightly perceive the inherent tension between personalized medicine and CER.
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.
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.
In this roundup, patient bloggers Barbara Kivowitz, Warm Socks and Kelly Young explain the difference between complaining and whining.
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.
The last time you went to your doctor, did you feel like he listened to you? Or did you feel ignored and left with more questions than answers?
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.
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.
In response to their February issue, New Era of Patient Engagement, Health Affairs
launched a new Facebook initiative to connect people with patient advocates. I was honored to kick off the Q&A series.
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?
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.
What we look for when we participate actively in our health care differs from what our clinicians, employers and health plans believe will result when we shift from being passive to active participants. We don't have the same goals in mind. Does this matter?
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.
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.
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.
“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.
It’s a stressful time to be a patient these days, what with expectations running high that we should be both empowered and engaged while self-tracking every trackable health indicator possible – and of course retaining an all-important positive mental attitude – in order to change health care forever.
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?
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.”
Everything changes with a diagnosis of Stage 4 cancer. I don’t really think that’s an overstatement. My relationship with my oncologists has, by nature, changed as well.
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.
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...
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.
I couldn’t do it. I couldn’t ask the nurses and doctor who looked after my daughter to wash their hands.
Patients have a way of hanging onto every nonverbal cue they notice, no matter how small.
I wish I'd known earlier that survivorship care is neither a do-it-yourself project nor is it something that I can simply hand off to experts…As former cancer patients, we can't just walk in to our appointments with our oncologist, survivorship specialist or primary care doctor every six months or year and have survivorship care handled for us…
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...
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"...
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...
In this week's health news: Patient-doctor relationship affects diabetes care | Women in Appalachia at risk for late stage breast cancer | People with asthma need not fear exercise | Treating depression helps some smokers quit...
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...
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.
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?
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.
What is patient engagement? Everyone agrees it's a good thing and that health care providers should be fostering it. How to do so, however, depends on what you believe the term means. I offer a new definition...
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.
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?
For the past few years I’ve heard suggestions that patients should take a more active role in their health care by asking doctors to wash their hands. I strongly disagree...
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.
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 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...
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...
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...
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.
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?
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...
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...
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?
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...
Over the years, we've listened to hundreds of people discuss their experiences with their health and health care. One thing that seems to come up for many people is how hard it can be to find good care and make the most of it, which includes knowing what to do at a doctor's appointment. The following tips can help...
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...
A recent conference at Harvard Medical School brought together scores of physicians who want to live healthfully themselves and to work as partners with their patients to help them do the same. I've attended many medical meetings but never one as much fun or as health promoting for participants as this one...
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"...
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...
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...
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...
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...
"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...
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...
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...
"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?...
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?...
"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
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
"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...
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!
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?
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...
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?...
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...
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...
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...
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...
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?
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"...