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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.
Easier said than done, says health researcher Sherrie Kaplan.
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.
Over the years, I've filled out plenty of forms at doctors' offices, but this was a new one for me.
The Center for Advancing Health, just released A Snapshot of People's Engagement in Their Health Care
, a study that found that most of us do relatively little to participate in our health care.
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.
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.
I've been spending time lately becoming more familiar with methods of public participation and the evidence behind participation. When I first moved to British Columbia, the government was sponsoring 'Conversations on Health' which I initially found exciting and innovative. That effort was designed to give the public a voice about health care in the province. I sent in my comments via the website and read about the public meetings being held throughout the province. I became a skeptic when I compared the data and original reports from the conversations and the conclusions. They didn't seem to match.
"What brings you here today?" It's a simple question that's at the heart of many patient-doctor conversations, but it's not a question to take lightly.
Three times a day, as though responding to some signal audible only to the generously medicated, we rise from our beds to join the slow procession around the perimeter of the unit. Like slumped, disheveled royalty, each of us blearily leads our retinue of anxious loved ones who push our IV poles, bear sweaters to ward off the harsh air conditioning and hover to prevent stumbles. Some make eye contact. Few talk. Each of us is absorbed in our suffering and our longing to return to our bed.
By the time I reached the sixth day of my hospitalization for stomach cancer surgery, I was antsy to go home and I quizzed each nurse and physician who came into my room about what must happen for me to be liberated the following day. Their responses were consistent: my surgeon would visit in the morning and write orders for my release. Then I would have a comprehensive discussion with my nurse about my discharge plan, after which I could leave.
As Gale Fisher approached her late 60's, she remained active - playing golf and walking, but pain in her right calf made walking difficult, and it was getting worse. Gale eventually saw her doctor who suggested fusion surgery. Gale sought a second opinion from a vascular surgeon. He proposed a major surgery that would require 10 days in the hospital to open the blood flow. Gale sought out third opinion. The information she received changed her life.
There is tremendous intuitive appeal in the idea that people must be engaged in their health care to benefit from it. To date, however, there has been little direct evidence to support the claim that our engagement affects health outcomes.
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.
It could be a broken wrist, or a life-altering battle with cancer, but sooner or later most patients run up against the diagnosis that sends them from their primary care doctor's care into the hands of a new physician. In medical circles, this transition is called the "handoff" a casual name that conceals the complications and risks of this journey.
'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.
It could happen tomorrow. The doctor says, "I'm sorry, I have bad news," and suddenly your life is turned upside-down, leaving you reeling from the shock of a potentially life-threatening diagnosis. Here is some advice on getting through that initial period.
As far as my chemo nurse Olga* is concerned, I can do nothing right. She scolded me for sending an e-mail when she thought I should have called and vice versa. She scolded me for going home before my next appointment was scheduled. She scolded me for asking to speak to her personally instead of whichever nurse was available. She scolded me for calling my oncologist directly. She scolded me for asking whether my clinical information and questions are shared between my oncologist and the staff of the chemo suite. I could go on'
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 mad scramble to figure out how to 'engage' patients in their healthcare has begun! Everyone from PR firms to hospital board members are trying to figure out how to engage patients in their health care. My question to hospitals and others is this: Why would you reject the help of thousands of individuals positioned in various ways to help you be more successful?
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.
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.
When nurse staffing levels are higher on hospital units, patients tend do to better after discharge, as long as overtime isn’t involved.
For some patients, delaying treatment while regularly monitoring the progress of disease may benefit them more than a rush to pharmaceutical or surgical options.
Clinicians have tried a variety of ways to encourage people to take prescribed medicines, but a new research review says it is still unclear whether many of these interventions have been effective.
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 today's fast-paced world, waiting ' whether it's at the doctor's office, in line at the grocery store or for an Internet connection ' is rarely considered a good thing. But when it comes to certain medical conditions, delaying treatment while regularly monitoring the progress of disease ' a strategy doctors refer to as 'watchful waiting,' active surveillance or expectant management ' may benefit some patients more than a rush to pharmaceutical or surgical options.
For many freshmen, the first year of college is devoted to classes, work and socializing, with little thought given to health or longevity. But for Nikkie Hartmann, a Chicago-based public relations professional, the start of her college career also marked the start of 14 years of dealing with cancer.
Fewer than half of primary care physicians talk to their patients about diet, exercise and weight management consistently, while pediatricians are somewhat more likely to do so, according to two new studies.
In The Wall Street Journal's Informed Patient column, Laura Landro notes various efforts hospitals are taking to prevent re-admissions, including Boston University Medical Center's use of a virtual nurse named Louise.
Watchful waiting has become a way of life for many of us. Last week Sam had his first six-month scan following treatment for esophageal cancer. It showed that that the original cancer had not recurred and that the tumors behind his eyes and the hot spots on his kidneys and liver hadn't grown. Sam and his wife, Sonia, are celebrating for a few days before they return to worrying, checking for symptoms and counting the days until the next scan.
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.
Only half of obese Mexican-American adults receive diet and exercise advice from their physicians, although obesity is on the rise for this group.
Sam Wainwright from New America's Health Policy Program offers his opinion on the controversy surrounding whether or not doctors should present or withhold data about patients' medical risks.
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.
Paula Span of The New York Times New Old Age blog could have used more information about medical risks when helping her father decide whether to remove a benign mole. Span wanted to know what the odds were of a benign mole turning malignant.
Many of you know that eight months ago I was diagnosed with Stage IV inflammatory breast cancer, which has spread to my spine. My incurable diagnosis means that I live with a chronic disease, just like millions of older adults.
"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.
When her mom has a heart emergency, medical student Katherine Ellington learns first-hand how health statistics apply to real life. This is the first in a series of three posts.
Past research shows that minorities suffer higher rates of advanced cancer and deaths from all types of cancer compared to whites. The role of “patient navigator” is emerging as a tool to address these disparities.
In recent discussions about patient non-compliance, Stephen Wilkins, Dr. Stewart Segal and patient Ann Silberman all emphasize that doctor-patient communication is key.
Just getting to the doctor, making appointments and taking time off from work or other responsibilities are major hindrances for some people to getting the medical care they need.
Do you suffer from decision fatigue when you are sick or anxious or overwhelmed by bad health news? Does your doctor make less well-reasoned decisions about the 10th patient she sees before lunch? How about the surgeon during his second operation of the day? How about the radiologist reading the last mammogram in a daily batch of 60? A provocative article by John Tierney in Sunday's NYTimes Magazine
adds a new layer of complexity to the body of knowledge collecting around decision-making processes.
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.
The recent case of Phillip Seaton, a Kentucky man who sued his surgeon after having a partial penile amputation, raises concerns about the effectiveness of the informed consent process, general health literacy and problems with doctor-patient communications.
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.
People with chronic illnesses are more likely to take long-term medications according to doctors’ instructions if the packaging includes a reminder system, according to a new review of evidence
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.
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.
Can we have 'evidence-based' care and 'shared decision making'? Are they in concert or in competition with one another? Drs. Pamela Hartzband and Jerome Groopman's new book, Your Medical Mind: How to Decide What is Right for You
, argues that a crash is indeed imminent.
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.
In this round-up, patient bloggers describe a mix of difficulties they experience in everyday conversations due to their illnesses.
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.
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 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.
We patients are always tourists in the world of health care. Whether we are coming to our doctor's office to rule out a strep infection, a clinic for a bi-monthly diabetes check-in, or a hospital for surgery, we don't work here.
Ethnic differences in appointment keeping may be an important factor in poor health outcomes among some minority patients with diabetes, according to a new study.
A workplace program designed to teach employees to act more like consumers when they make health care decisions, for example, by finding and evaluating health information or choosing a benefit plan, also improved exercise, diet and other health habits, according to a new study in the latest issue of the American Journal of Health Promotion.
This interview with Carol Alter is the eighth 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.
One major challenge for the new Patient Centered Outcomes Research Institute (PCORI) is to make good on its stated mission to improve health care by producing evidence "that comes from research guided by patients, caregivers and the broader health care community."
When my son Ben came down with a sore throat this past summer, he went to his doctor for antibiotics. Both agreed it sure sounded like strep, so without having to wait for the throat swab test results, Ben left the office with a prescription for antibiotics. But were they the appropriate treatment? Do all bugs need drugs?
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.
I was first diagnosed while on vacation in 1994. A doctor entered the room and, without warning, said that I had 'a terminal and incurable form of leukemia' and 'less than five years to live.' Just like that. Turns out he was wrong'
User reviews and ratings on websites can help you locate a reputable handyman, the perfect restaurant for your anniversary dinner or the right TV for your den. So why wouldn't you turn to the Internet to find your next doctor? New health review sites promise to help you make this important decision for yourself or your loved ones. However, patients and physicians alike are finding that these doctor reviews aren't as transparent or useful as they might seem.
When it came time for Jennifer Stevens, an Omaha, Nebraska resident and mother of two, to find an obstetrician for her first baby, she was faced with a dilemma.
It is completely understandable if you associate the term 'cancer survivor' with an image of glamorous, defiant Gloria Gaynor claiming that She. Will. Survive. Or maybe with a courageous Lance Armstrong in his quest to reclaim the Tour de France. Or perhaps it is linked for you with heroic rhetoric and pink-related racing, walking and shopping.
Patients who feel their physicians treat them with respect and fairness, communicate well and engage with them outside of the office setting are more active in their own health care, according to new study in Health Services Research.
I believe that it is unrealistic to expect that we will easily understand and ably engage in team care, shared decision making, care coordination and make use of patient portals of EHRs. Each of these carries the risk of being misunderstood by us in ways that further disenfranchise our efforts and good will unless it is discussed ' and recognized ' as the valuable tool it is.
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.
Today, physicians are confronted with an explosion of new technology, increasingly complex interventions, and an evolving focus on the need for longitudinal support of health issues, requiring increased involvement of our patients. While we may use different terms'engagement, involvement, empowerment, activation'in our discussions, all of them speak to the need to have active participation from patients and, in many cases, their family and other caregivers.
There is a growing recognition that the doctor-patient relationship needs to evolve from the traditional model of dominant doctor/passive patient to one that is more collaborative. Here are examples of how this relationship affects people's involvement in their care.
The new year set me reflecting about what I've learned about being sick over the past 12 months that only the experience itself could teach me. You know that old Supremes song, 'You Can't Hurry Love'? I learned that you can't necessarily hurry healing either, even if you work hard at it.
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.
We are all going to have to become tougher and smarter, even when we are sick if we are going to benefit from the health care available to us. What is it that we really need to know to do this successfully?
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 idea that we should actively participate in our health care now attracts attention akin to the discovery of a cure for the common cold.
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.
Primary care providers fail to recognize anxiety disorders in two-thirds of patients with symptoms, reports a new study in General Hospital Psychiatry.
This week, three health care insiders highlight the role physicians play in promoting patient engagement.
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.
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.
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.
Things are different for me now. Today I belong to that group of people with serious illnesses who spend lots of time in doctors' offices, diagnostic labs, and imaging centers. I quickly discovered that I had some interesting choices about my care.
Everyone in health care is talking these days about patient engagement, but a funny thing happened on the way to the discussion: There doesn't seem to be a widely agreed-on definition of what this actually means.
Primary care is the entry point into health care for most people. It provides the continuity of care over the lifespan. From that standpoint, it is the most familiar, trusted experience people have with health care.
If your computer has ever slowed way down you may have been advised to "defrag," which puts all parts of a file together in the same place on the drive, enabling it to run faster and more efficiently. In much the same way, your health care might need to be de-fragged.
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.
People with multiple chronic medical conditions are helped by medical interventions that target personal risk factors and/or their ability to perform daily activities. Interventions aimed at general case management or enhancing teamwork among a patient’s care providers are not as effective, finds a new review in The Cochrane Library.
New research about why people forego colorectal cancer (CRC) screening suggests that three fears play a significant role; fear of embarrassment, fear of getting AIDS and fear of pain may make some seniors skip the potentially lifesaving tests.
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.
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.
Health care professionals do a better job helping people quit smoking when they are trained in smoking cessation techniques, a new Cochrane Library review finds.
Providing patient care using key features of a Patient-Centered Medical Home (PCMH), a model of health care delivery promoted by major physician groups, may not influence what patients think about the care they receive, reports a new study in Health Services Research.
A few weeks ago, in front of a few friends and lots of total strangers, I shared experiences about RA and explained specific ways that direct patient input could improve every aspect of health care, from research to diagnosis to treatment delivery.
The gap between the demands placed on us by U.S. health care delivery and the ability of individuals even the most informed and engaged among us to meet those demands undermines the quality of our care, escalates its cost and diminishes its positive impact on our health.
Though I may want fast food health care when I'm healthy, I don't want it if I'm sick or have the potential to be sick. People want to have the opportunity for a dining-in experience, not just fast food.
In some surveys, U.S. consumers seem primed for health engagement, liking the ability to schedule appointments with doctors online, emailing providers, and having technology at home that monitors their health status.
In our current health care environment, in which patients are sometimes discharged quicker and sicker, they are expected to be more in charge activated than ever. They need to make and keep follow-up doctor appointments, manage complex medication regimens, organize home health care and visiting nurse appointments, store powerful medications, and track, monitor, and report changes in their health status. It's a tough order, especially for people like my father, who do not know or understand the health care system, and find its workings difficult to navigate.
My mother, Sandy Ying Zhang, is my role model and my inspiration for what I do every day. She was diagnosed with breast cancer when she was in her forties, and fought it courageously for seven years until she passed away in 2010.
Growing up, I was always in awe of my doctors. It was almost as if they lived on a cloud. You never ever questioned their expertise, and very rarely would you ask for a second opinion. Going to the doctor was a nerve-wracking experience, where you spoke only when they asked questions. I always wondered what would happen if I did question them. But I never did. I was too afraid.
“...If you need a wheel chair to take you to the door, I’ll call for one. If not, you can go home. Take care of yourself. You are going to do great!”
Now I am a sucker for encouraging words, but right then, I panicked...It was 8:45 in the morning. My husband hadn’t yet arrived. I was free to walk out the [hospital] door.
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.
Kristen Gerencher of The Wall Street Journal’s MarketWatch, recently interviewed me about internet users and online health information.
On Friday afternoon of Labor Day weekend three years ago, my doctor called to tell me that the pathology report from a recent endoscopy showed that I had stomach cancer. Maybe you can imagine what happened next.
People with a family history of certain diseases, including heart disease and diabetes, often underestimate their risk for developing them, even after completing a risk assessment and receiving personalized prevention messages, finds a new study in the American Journal of Preventive Medicine.
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.
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.
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.
What does it take for us and our families to find good care and make the most of it? And what can be done to help those who lack the skills, resources or capacities, or who are already ill, compensate for their inability to do so? This collection of essays identifies some of the key challenges posed to most of us by health care as it is currently delivered in many settings.
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.
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.
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.
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.
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.
People who are given tools to help them decide whether to have a colorectal cancer screening test are more are likely to request the procedure, finds a new study in the American Journal of Preventive Medicine.
It's not enough for patients to be merely satisfied with their health care. Our expectations and perceptions of the patient experience vary widely, but at the end of the day what we seek is health care that is patient-centered: care that meets our needs. Patient-centered care requires patient engagement and self-efficacy, our active participation in our health and disease management.
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.
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.
The quality of doctors and hospitals varies. Here is information to help you find the right care.
You and your doctor need accurate information from each other. Open communication with your doctor is one of the most important factors in getting and staying healthy.
Got a new prescription? Here are some tips for managing your new medication.
Describing your symptoms well can help provide clues to what’s wrong. Here’s advice on how to tell your story.
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.
Most patients know what this feels like, so it’s reassuring to learn that academics are actually studying it: our fear of being labeled a “difficult patient”.
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.
Better health is more likely when we agree on a plan of action with our doctor and follow it.
Feeling uneasy with or disrespected by your current doctor? Our experts — both physicians — talk frankly about rocky spots in doctor-patient relationships.
A shared care plan can be a guide to treatment goals that you and your doctors agree on, and it can set the rules of engagement as you pursue your treatment.
How to ask your doctor questions so that you can understand your diagnosis and treatment options.
How to get a copy of your medical records for your personal files and for your doctors.
Different doctors can suggest different diagnoses or ways to treat your illness. Here’s how to decide whether you should get a second opinion.
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?
These 10 steps will help you get the information you need for your doctor’s appointment.
Part of participating in your treatment is remembering to take your medication as prescribed. This task can get difficult if you aren’t feeling well or are juggling multiple prescriptions
In these essays, I reflect on what I wish I'd known earlier about getting good care following active cancer treatment for five different cancer diagnoses, based on my own experience and what I have learned from others.
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.
Two recent experiences left me ornery and impatient about the current state of mobile health apps. Why haven’t they just taken off?
In addition to dispensing, packaging or compounding medication, pharmacists can help improve patient outcomes in middle-income countries by offering targeted education, according to a new review in The Cochrane Library.
Have you heard that soon most primary care in the US will be delivered by teams? Yep. Team-based care is one of the characteristics of the patient-centered medical home, a way of organizing the care of patients that allows primary care clinicians to see more patients in a day while at the same time delivering better care.
CFAH President Jessie Gruman shares her Prepared Patient® story.
Low-income patients served by “safety-net” community health centers want to communicate with their doctors via email or text or are already doing so, according to a new study in the Journal of General Internal Medicine.
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.
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.
Primary care providers could help people with warning signs of psychosis get critical early treatment and potentially reduce the current burden on emergency departments and inpatient units, finds a study in the journal Social Psychiatry and Psychiatric Epidemiology.
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?
Americans have embraced their role as consumers in virtually every aspect of life: making travel plans, trading stock, developing photos, and purchasing goods like cars and washing machines. That is, in every aspect of life but health care.
When the report called "Tracking for Health"
was released last month, media headlines announced: “Over Two-Thirds Track Health Indicators!”
Surprisingly, very few headlines ran the real news from the report: “Only 21% Use Technology to Self-Track!”
Yet as of last autumn, more than 500 tech companies are busy developing The Next Big Thing in self-tracking tools.
A few discouraging reports on patient engagement have skittered across my desk in the past few weeks. What's going on? Why are so many of us so slow to engage in our care when it is increasingly clear that we will do better if we participate more fully? Here's what I suspect...
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?
Improving people’s knowledge and skills about their medications may be best achieved with multimedia patient education materials, finds a new systematic review in The Cochrane Library.
When I read Trudy Lieberman’s post yesterday, I was reminded that the highly charged political debates about reforming American health care have provided tempting opportunities to rename the people who receive health services. But because the impetus for this change has been prompted by cost and quality concerns of health care payers, researchers and policy experts rather than emanating from us out of our own needs, some odd words have been called into service.
In the Coen brothers remake of the 1969 movie True Grit, Mattie Ross, an intrepid 14-year-old, is determined to hunt down and kill the man who murdered her father. To accomplish this, she hires U.S. Marshal Rooster Cogburn, (played by a mumbling Jeff Bridges) a rough, one-eyed veteran of many such quests then announces that she plans to come along. She figures she is prepared.
Perhaps the most powerful influence we can have in health care is simply acknowledging that we have choices and wondering, out loud, what those might be. Whether or not you plan to do in-depth research about your treatment options, consider asking your doctor three simple questions.
What I’ve learned since my heart attack is that, until you or somebody you care about are personally affected by a life-altering diagnosis, it’s almost impossible to really get what being sick every day actually means…
Here's the bad news: We will not benefit from the health care services, drugs, tests and procedures available to us unless we pay attention, learn about our choices, interact with our clinicians and follow through on the plans we make together.
“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?
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.
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.
Recently, Inspire passed a milestone: five million posts written by the patients and caregivers in their online health community. Brian Loew, founder and CEO of Inspire, reflects on what Inspire’s learned from patients and caregivers.
My experience is that e-patients and clinicians can agree that they seek "best health". Yet there is such a disconnect, such frustration, so much of the time. A pervasive gap exists between the way clinicians and e-patients approach this goal...
Most sexually active teens don’t get information about sexual health from their health care providers, finds a new study in the Journal of Adolescent Health
What’s wrong with the following picture? Two medical researchers at a major academic center collaborate to study disease X. They come up with the research question, design the project, obtain grants, and collect data. Their results are published in a scientific journal and presented at several medical conferences. Based on this first study, the researchers start another cycle of idea generation, data generation, and publication.
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.
Have you ever felt that claims about the effects of our access to new and more health information overshoot the mark?...Given the sheer volume of information online, you should be able to find robust information about each of these issues that could transform the way you care for yourself.
Last week, both my husband and I came away from a conversation with my doctor positive that we understood my new weight-gain plan. Funny thing: Each of us recalled a different plan.
A survey of men age 40 to 74 found that 54 percent said that they would still opt for a popular prostate cancer screening test despite recent recommendations that the test not be performed, finds a new study in American Journal of Preventive Medicine
I’m not a big fan of bargaining and my half-hearted attempts to get a better price for a used car, garage sale find or contractor’s service have been mostly unsuccessful. There’s always that nagging feeling that the seller is laughing with delight once I’m gone, thinking, “I really pulled one over on that rube!”
And so it has come as somewhat of a shock to me that medical care has become the new garage sale, as far as haggling goes.
This week in health news: Using shame to promote weight loss doesn’t work | Black nursing homes face challenges | Hispanic and Black children not getting the right asthma meds | Electronic health records not widespread
I have been treated for five different cancer diagnoses. Some would call me a cancer survivor. I call me lucky...
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?
The key to improving the health outcomes of our older patients (and the overall quality of our healthcare system) is through re-investment in dialogue between patients and clinicians and a strengthening of trust within the patient-clinician relationship.
As a doctor, I am compelled to write because of what I know is occurring with alarming frequency in our country. Americans are skipping needed and recommended care that could save their lives and allow them to live to their fullest. Patients are more distracted, as life is more complicated and busier than ever. Households have both parents working, sometimes two jobs, just to make ends meet.
Have you noticed all the articles in the health care press lately touting health information technologies’ ability to increase patient medication adherence? Smart phone-based apps, Smart pill bottles and Patient Portals are all about trying to get patients to do something (take a medication) which some physician somewhere has deemed to be the right thing for the patient to do. Some would call this process of generating adherence patient engagement.
We are not the only ones who must be convinced that we have unique health concerns following the active treatment of our cancer. Clinicians must also believe that special care for us is important, and they have to learn how to provide that care.
Recently, I participated in an excellent meeting, (Patient Summit USA 2013), whose primary theme was patient adherence. Thankfully the other speakers had all moved beyond the notion that "patients forget to take their medication" and that adherence can be solved by fancy pill caps or bottles; yet I was struck that most did not yet fully appreciate the challenges of a complete adherence picture, particularly for patients on multiple therapies.
In a recent Baltimore Sun piece, healthcare writer Marie McCarren wrote an op-ed providing “A prescription for fewer medical errors” — reflections from an emergency room visit with her husband that later turned into a stay on the intensive care unit. McCarren emphasized the need for healthcare providers to work at clearly communicating the ways in which family members of patients can help make care safer.
The side effects of cancer treatment sometimes fade but can become permanent glitches — disturbing symptoms whose impact we try to mitigate and whose presence we attempt to accommodate.
In 2010, I had surgery to remove a 2-inch heart tumor in my left atrium, the costs for which were astronomical, but that is not what I am writing about. I am writing about what happened in the months after my surgery and a cure that cost $9.19 if you don’t count all of the unnecessary doctor visits and procedures.
Here’s a wonderful idea: patients and providers working together in shared decision-making, accepting and trusting each other’s input. Isn’t that the goal our health care system should strive for? Not so fast.
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?
A survey of older rural adults found a high degree of medical skepticism, the belief that one knows and can control their own health better than a medical professional can, reports a recent study in the Journal of Health Care for the Poor and Underserved
I was diagnosed with breast cancer at the age of 34. When I brought up the topic of fertility with my oncologist, I was presented with a stark choice between life-saving treatment or a chance at becoming a mother.
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…
Ever heard the saying "You never step into the same river twice"? It has taken me a long time to apply its meaning to my experiences with five different forms of cancer as well as a variety of serious late effects of my treatments...
My doctor can help me figure out what is right for me by considering my values and preferences and helping me to understand the scientific evidence.
I'm always juggling more than one role, making second-to-second trade-offs depending on which is the most demanding at the moment. Becoming ill demands that we shift responsibilities around.
Only half of patients take the drugs as prescribed for them by their physicians. So what happens to the other half? And why does this costly problem continue despite efforts to improve patients’ adherence to prescription medications? There are many potential solutions, but not all of them are likely to become available...
What people pay for medicine can vary widely. And a recent study found that 20% of Americans take five or more prescription medications. These 'Be a Prepared Patient' resources can help people pay for and manage their medications.
It can be hard to figure out how much your health care will cost ahead of time. Here are some tips for preparing for the cost of your procedures.
Having trust in one’s physician has been correlated with better adherence to diabetes self-care, finds a new study in the American Journal of Health Behavior
Talking about the flu vaccine used to be straightforward. But with the proliferation of vaccine options, it has become much more complicated. More options for consumers = better for everyone, right? Well...
What's your assessment of the health news and information produced by the media these days? Is it accurate? Useful? Interesting? Improving, or worse than five years ago?
It's a widely accepted truism that increasing patient engagement in health care leads to lower costs and better outcomes. And really, it shouldn't be a problem to convince us to act on our own behalf and engage in the behaviors that support health, right? I see two problems with this viewpoint and with the assertion that patient engagement will lower the cost of health care...
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...
As a patient, I ask you: What aspects of my health care are not preference-sensitive? Even patients who have passed control to a trusted clinician or caregiver are eager to reclaim territory lost.
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...
Teens with a variety of chronic illnesses report facing similar barriers to taking their medications, according to a new review in the Journal of Adolescent Health
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.
Outsourcing work to cheaper workers is a common strategy of corporations. It has largely escaped the public’s notice, however, that much of this new labor force isn't located in Southeast Asia, but is rather found here in the U.S. and is virtually free. It is us...
Blacks, Hispanics and Asians are less likely than non-Hispanic Whites to visit a health care professional, even with health insurance, finds a recent study in the Journal of Health Care for the Poor and Underserved
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.
The number of adverse events reported for the HPV vaccine Gardasil® correlated with an increase in the number of media stories about the vaccine, finds a study in The Journal of Adolescent Health
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?
Electronic health records collect non-clinical information that can be used to measure a medical practice’s patient-centeredness, finds a new study in Health Services Research
African Americans with high blood pressure who reported experiencing racial discrimination had lower rates of adherence to their blood pressure medication, finds a new study in the American Journal of Public Health
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...
People who identified their medication by shape, size or color instead of name had poorer adherence and an increased risk of hospitalization, finds a recent study in the Journal of Health Communication: International Perspectives
It is challenging, in the years following a cancer diagnosis, to assemble health care that protects us from the lingering effects of the disease and its treatment and that alerts us to a recurrence or new cancer. I hope these reflections will help those who've been diagnosed with cancer live as long and as well as they can...
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.
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?...
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...
A new study in the Journal of Adolescent Health
finds that pharmacy staff frequently give teens misleading or incorrect information about emergency contraception that may prevent them from getting the medication.
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 five of our series, we look at the yearly check-up and offer resources for people who are trying to decide which preventive care services are right for them...
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...
A majority of surveyed physicians said they were alerted to a potential medication error or critical lab value by an electronic health record, finds a new study in Health Services Research
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...
Team-based care has been endorsed by the professional organizations of our primary care clinicians, and there is a lot of activity directed toward making this the way most people receive their regular health care. What does this mean for us? It's not clear...
It's unfair to advise people to find out the price of a treatment when the price-transparency deck is stacked against them. So who will help patients find reliable price information and (hopefully) bring down the cost of care?
Getting and being sick changes everything in your life, and that includes how you manage your health. For people focused on so-called patient engagement, health empowerment, and social networking in health, the elephant in the room is that most people simply don't self-track health via digital means...
If hospitals, health plans and physicians expect patients to change their behavior, they themselves have to change the way they think about, communicate and relate to patients. As a first step, I suggest that they stop blaming patients for everything that's wrong with health care...
Lately, the public's faith in the safety of prescription and over-the-counter drugs has been making me uneasy. Why do so many of us continue to purchase pills that are not effective in causing weight loss, swallow syrups that promise to cure diabetes, and fiddle with our medication-taking regimens?...
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...
A new study in the American Journal of Health Behavior
finds that teaching people about smoking cessation—even those without a medical background—can motivate them to encourage their friends, family and acquaintances to stop smoking.
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 idea that knowing the price of our care will encourage us to act like wise consumers is a hugely popular topic on blogs, in editorials and in the news. But relying on access to price information to drive changes in our health care choices is full of false promises to both us and to those who think that by merely knowing the price, we will choose cheaper, better care...
Most days, I have learned to function pretty well. But take a few unexpected health challenges, no matter how minor they may seem to others, arriving at the same time and piled onto an already-full plate and you have an explosion of overwhelm that looms larger than the average healthy person could even imagine. I've become a non-compliant patient...
A new study in General Hospital Psychiatry
finds patients visiting the hospital for a variety of ailments can be easily screened for depression and anxiety as they wait for care.
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...
A new parent’s health literacy can affect their ability to follow recommendations to protect infants from injury, finds a new study in the American Journal of Preventive Medicine
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?
Patients with an existing relationship with a doctor ranked as lower performing were no more likely to switch doctors than patients with higher performing doctors, finds a new study in Health Services Research
Opponents of health care reform, especially those who resist moving to a single payer system like Canada’s, have often used a very powerful argument to sway public opinion. Any significant changes, they warn, to America's private insurance system would mean that the government will come between patients and their doctors by making decisions about the care Americans receive. But what if it's not the government that is inserting itself between you and your doctor?
There's a pesky cognitive bias that creates a honking big barrier to patients and families making the most of the health advice and services available to us. It's the tendency of experts to overestimate the knowledge of others. Given my current, frequent brushes with health care, I experience this all the time: "Just go to the lab and ask them," I'm told by my chemo nurse. I think: Huh? What lab? Where? Ask who? The effects of health stakeholders' overestimation of our knowledge are profound...
I recently had breakfast with an aging cousin, Walter, who has become infirm in his senior years. I knew he had several doctors and took medicine. It wasn't until breakfast time, however, that I realized how many medicines Walter took – and I was bowled over...
Despite having access to online ratings, patients can’t distinguish the quality or performance of one hospital from another, finds a new study in Health Services Research
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?
"I walked in a person, and out a cancer patient," my dad said as we filed home. Crossing this threshold, we found ourselves on the other side of medicine – the side on the exam table or gurney, as opposed to the one standing over it. In time, it became clear we were running out of money...
In boxing terms, this is completely literal, sound advice. As a figurative metaphor for illness, it's not bad, either. Because no matter how competent, how smart, how resourceful we may think we are before a catastrophic health crisis strikes, many of us may suddenly feel incompetent, ignorant and helpless when thrust inexplicably into the stress of such formidable reality...
It is common for those who work in and deliver health care to overestimate our knowledge about our bodies, our illnesses and how the health care system works. Such as: Who is the nurse practitioner? Where is Dr. X's office? When is "soon"? Why are you recommending this test? To help people find good health care and make the most of it, the following video explains two key things to ask when making your appointment and three questions to get answered before you leave your doctor's office...
My patient, Mary, was a 28-year-old woman who had completed chemotherapy for stage II breast cancer. After discussing surveillance, frequency of follow-up and ASCO guidelines, I recommended against further testing or imaging. Mary was well aware of the evidence, but she had different plans...
Pharmacist-patient telephone consultations appear to reduce hospitalizations in patients who are least at risk, finds a new study in Health Services Research
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...
Yes, there are some data-fan, quantified-patient types out there. But most of us are not enamored of monitoring bits and bytes of our biophysical functioning. So perhaps we can turn our attention toward patients' more immediate concerns of having the right information at the right time in order to care for ourselves and those we love...
The word "management" raises images of organizational charts and neat project timelines. This bears no relationship to my experience of trying to live a full, rich life with serious chronic disease. My image of having a serious chronic disease is of a cowboy riding a rodeo bull. You call that management? No. But it gives you a pretty good idea of what it feels like to have a serious chronic disease. This is our experience...
A recent clumsy mishap at the gym landed me in the emergency department. Lying in the hall, feeling hapless and helpless, I was in no position to make any important health decisions, had they been needed, or to remember anything important that might have been said. Later, I understood on a deeply personal level the need for a patient advocate...
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.
Uninsured adults who didn't understand health insurance tended to have trouble selecting plans that aligned with their stated needs and spent more money, finds a study in Health Services Research
One in every five older Americans takes medications that work against each other. And some interactions between prescription drugs and supplements can pose dangerous health risks. So what must we do to make sure that we benefit from the drugs we take?
Teaching people with diabetes how to control their blood glucose levels, not their doctors, helps them achieve better results, finds a new study in Ethnicity and Disease
Unfortunately, the nitty gritty of getting good care is not really newsworthy, unless we're talking about how poor it is. However, there are opportunities for journalists and writers to report "news you can use" that would be very helpful to many people, and there is a big gap in reporting on most of these necessary tasks...
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...
A national survey of patients reveals that physicians don’t always fully discuss the risks and benefits of cancer screening, reports a new study in American Journal of Preventive Medicine
To those of us who have had a loved one succumb to cancer, who had to negotiate the frightening choice between the rock and the hard place, always holding out hope for another round of chemo...we know that reining in health care costs will mean more than just raising co-pays and lowering drug costs and funding more effective interventions. It will also mean quashing hope. And learning to tell ourselves the truth...
Some low-income, uninsured and Medicaid patients report feeling stigma when interacting with health care providers, finds a new report in The Milbank Quarterly
"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...
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...
"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.
Palliative care delivered early during hospitalization can help cut costs for critically ill patients, finds a new study in Health Services Research
I was one of the patients interviewed for the recently published Center for Advancing Health report called "Here to Stay: What Health Care Leaders Say About Patient Engagement". It's an interesting, illuminating and frustrating document to read. My concern, as a person who's pretty darned engaged in my own health care, is not that the phrase is meaningless. It's more that non-patients have co-opted the concept of patient engagement for their own purposes...
The physical and mental well-being of people with cancer may be affected by how they feel about their relationship with their physician and by differences in attachment styles, finds a new study from General Hospital Psychiatry
"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
Teens who have the option to privately and confidentially discuss health concerns with their doctor are more likely to talk about certain issues than they would be in discussions where a parent is present, finds a new study in the Journal of Adolescent Health
As the number of patient centered medical homes has increased, a new report in the journal Health Services Research
finds the model offers a promising option to reduce health care costs and utilization of some health care services.
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
"Since patients don't live in a vacuum, we must also involve the community in which patients live, work, and play. Community resources must be readily available to meet the needs of the population they serve. Also, as we begin to have patients and families engaged in their care and talk to peers and extended family members, they begin to model engagement to others. We are looking for 'engaged communities.'" - Jean Moody-Williams - Group Director, CMS Quality Improvement Group, Baltimore, MD
"Most health plans view engagement as important and want to support it. But they recognize that they are only one (relatively weak) factor in supporting patient/consumer engagement... Their customers want their insurance premiums going to medical care, not a bunch of mailings about things they already know they should do..." – Arthur Southam, MD – Executive Vice President of Health Plan Operations, Kaiser Foundation Health Plan, Oakland, CA
A new study in the Journal of Adolescent Health
has found that one in five young adults with chronic illnesses said the transfer of their care from pediatrics to adult-oriented health care was unsatisfactory.
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
Not long ago, the only options my patients had for communicating with me were to come in to the office or relay a message through the office staff. But since recently introducing the patient portal in our electronic medical record, my practice has changed substantially for the better...
What's the best way to choose a new doctor? We can ask friends, family, or our current doctor for a referral. We can pick the provider who's closest to our home or office. We can look them up online and read their reviews. But research finds that online physician ratings are far from perfect...
"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...
The use of social networking sites like Facebook may have implications for accessing online health information, finds a new longitudinal study from the Journal of Health Communication
Pregnant women who felt pressured to have a labor induction or cesarean section by their obstetrical care providers were significantly more likely to have these procedures, even if there was no medical need for them, suggests a new study in Health Services Research
Today, CFAH launched @PreparedPatient, a new Twitter feed featuring trusted tips, resources, stories and news to help followers find good health care and make the most of it. Prepared Patient was created by the late Jessie Gruman and continues the themes of @JessieGruman tweets...
As many as half to two-thirds of women who’ve undergone hysterectomies or are older than 65 years report receiving Pap tests for cervical cancer, despite recommendations against it, finds a new study in the American Journal of Preventive Medicine
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...
My friend Jane is quite a perfectionist, at least usually. I was almost certain that if she was having work done on her kitchen, she would be getting competitive bids, asking for references and reviewing vendors. But not for her shoulder surgery. Perhaps we need a concise mantra for what it means to be a health care consumer...
As patients we want an answer and a treatment – if not a cure – for what ails us. But sometimes the doctor doesn't know what's wrong, which isn't as rare as we might think. All too often, patients or their families must take charge of their own medical management. Doctors, after all, are human, and some are better diagnosticians than others. Here are some things to do if you or a loved one is struggling with an undiagnosed condition...
We'd all like to believe that the average physician would have some clue about a medical crisis happening within a family she's been caring for during the past three decades. But it ain't necessarily so. If you've ever been discharged from a hospital by one doctor only to later be readmitted to the hospital under a different doctor's care, you may be surprised to learn that those doctors are not likely talking to each other...
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...
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.
Jessie defined patient engagement as "the actions we take to support our health and to benefit from health care." As I reflect on this, I see that we have come to a crossroads. Jessie can no longer lead us and the organization she formed, CFAH, will soon cease. Now is the time for us to let our voices continue the discussion and to push the patient engagement agenda forward. Are we ready?...
In July, CFAH released its final report on the state of patient engagement in the U.S., Here to Stay: What Health Care Leaders Say about Patient Engagement
, a collection of interviews with 35 key informants from seven groups with an interest in patient engagement. We asked health care leaders to define patient engagement, explore its impact and barriers, and share promising interventions. Six key themes emerged from our discussions...
The Board of Trustees of the Center for Advancing Health (CFAH) is pleased to announce that two new awards honoring the late Jessie Gruman’s exemplary leadership in the field of patient engagement have been established at the following distinguished organizations: the Society for Public Health Education, Inc. and the National Coalition for Cancer Survivorship. A third organization, the Society of Behavioral Medicine (SBM), received additional funding from CFAH to extend its Jessie Gruman Award for Health Engagement, which was established in 2014...
Jessie Gruman founded the Center for Advancing Health in 1992 and served as president until her death in 2014. After over 20 years under her remarkable leadership, CFAH ended operations in December 2014. This post was Jessie's final essay announcing the release of CFAH’s last patient engagement research report and sharing some personal reflections on her career...