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When Facing a Serious Diagnosis, 'AfterShock' App Can 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"...Taking Risks With Needed Drugs Due to High Cost
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?Medicaid Payments for Office Visits Impact Cancer Screening Rates
New research in the journal Cancer finds that Medicaid recipients are more likely to undergo cancer screening tests when their doctors receive higher reimbursements for routine office visits rather than for the tests themselves.Should You Trust Your Doctor's Advice?
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...We Don't Ration Health Care in America. Or Do We?
As narrower insurance networks begin to limit where we can get our care and contradict the American notion of abundant choices, I thought about the Canadian health care system and rumors of its long waiting lists that grab U.S. headlines. Yet, narrow insurance networks, sky-high deductibles, co-insurance and co-pays are ways of controlling our medical expenditures. Instead of rationing with waiting lists, America rations with price...Medical Errors: Will We Act Up, Fight Back?
A new report, "The Politics of Patient Harm: Medical Error and the Safest Congressional Districts," is an alarming reminder that the 200,000 or more preventable medical errors in U.S. hospitals remain stubbornly high and dangerously under-addressed. In early 2013, CFAH's founder and president, the late Jessie Gruman, challenged readers about the crisis: "It is needlessly killing a lot of people and those who have the responsibility to stop it have not made meaningful progress... Are you outraged? If not, why?"...Fecal Blood Test May Save More Lives Than Colonoscopy
Colorectal cancer, or CRC, is the second-leading cause of cancer deaths in the United States. State public health programs could screen nearly eight times as many individuals and prevent nearly twice as many CRC cases by using fecal immunochemical testing, or FIT, instead of colonoscopies, finds a new study in Health Services Research.A Doctor's Dilemma of Prescribing for Pain
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?...Timing of Epidural Is Up to the Mother
When a woman is in labor, the appropriate time to give an epidural during childbirth is when she asks for it, suggests a new review in The Cochrane Library.Have You SEEN Your Options? Patients Should Make Safe, Effective, Economical, Necessary Choices
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...'Be a Prepared Patient' Gets a New Look
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...Many Women Receive Unnecessary Pap Tests
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.Teens World-Wide Self-Medicate With Over-the-Counter and Prescription Drugs
Adolescents around the world are frequently using over-the-counter and prescription medications without a doctor’s order, a risky practice that can lead to overuse and abuse and is often continued into adulthood, reveals a new review in the Journal of Adolescent Health.Pressure from Providers Leads Some Women to Have C-Sections, Inductions
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.Another Strategy in the Health Care Reimbursement Game
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...Are Medical Checklists Bad for Your Health?
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...What Health Care Consultants Told CFAH About Patient Engagement
"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, RIFew Overweight People with Diabetes Getting Recommended Physical Activity
Women and men with diabetes who are trying to lose weight are not meeting the recommended amounts of physical activity for weight loss, finds a new study in the American Journal of Health Promotion.Getting Bumped to First Class Health Care
I am writing this post while seated comfortably in a motorized leather recliner with a window view and lots of other perks. What a legacy we would leave Saskatchewan citizens if we could figure out how to extend this first-class patient care to all patients and their families wrestling with chronic disease...What Patients Told CFAH About Patient Engagement
"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 blogFrom Wonder Drug to Medical Reversal
One thing seems to be sure in medicine: if we just wait long enough for excellent science to guide us ahead, things we trust as ironclad rules often change. Case in point...Clever Hospitals Find Another Way to Snag New Patients
As I sat on a New York subway one sizzler of a day, an ad for an ice cream cone grabbed my attention. After a closer read, I realized the ad was not touting ice cream but the Center for Advanced Digestive Care, a part of New York Presbyterian, one of the city's most prestigious hospitals and well known for its TV ads designed to cultivate brand recognition. The ice cream cone was an effective attention-grabber. So was the message…What Employers and Purchaser Representatives Told CFAH About Patient Engagement
"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, MEFacing a Serious Diagnosis? 'AfterShock' Now an App
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...AfterShock: Facing a Serious Diagnosis App
The free app AfterShock: Facing a Serious Diagnosis offers a basic roadmap through the first few days and weeks after a serious diagnosis, providing concise information and trusted resources to help you regain a bit of control during this turbulent time. Whether your diagnosis is cancer, Alzheimer's disease, HIV/AIDS, multiple sclerosis or another condition, the decisions you make about your care will have an important impact on you and your loved ones.Ingenious Hospitals Find a New Way to Snag Patients
A mother takes her teenage son to an urgent care center that is part of her insurance plan's network. A clerk quickly refers him to the emergency room, across the street, which just happens to be part of the same hospital system as the urgent care center. Is this UCC sending some patients to its related hospital ER, clearly a place of high-priced care, to gin up revenue for the system's bottom line?...When Does a Patient Need to Be Seen?
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?...What Community Health Leaders Told CFAH About Patient Engagement
"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, CAHas Patient-Centered Health Care Run Amok?
In the late 1990s, when the Institute of Medicine released their landmark Quality Chasm report saying that patients "should be given the necessary information and the opportunity to exercise the degree of control they choose over health care decisions that affect them," I don't think this is what they had in mind...Asthma Drugs Suppress Growth
Corticosteroid drugs that are given by inhalers to children with asthma may suppress their growth, suggests two evidence reviews published in The Cochrane Library.Stop the War on the Emergency Room (Fix the System Failure)
The ED is convenient, it's open 24 hours, it does not require an appointment. So when the stomach bug or kitchen accident gets the best of you at 9:00 pm, and your doctor's office is closed, where are you going to go? And, yet, we still chide people – via reporting, casual comments and the communication of health systems – for using the ED for "non-emergent" needs. What I'd like to see is more hospitals flinging open the doors of their EDs and saying, "We'll take you, any time, for any reason, and you won't wait long or pay an arm and a leg"...Patient Engagement: Here to Stay
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...Not So Easy to Stop Care When the Patient Is a Loved One
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...Shared Decision Making Missing in Cancer Screening Discussions
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.Stop Expecting Antibiotics to Be Handed Out Routinely: Here's Why
For years, my colleagues on the Prepared Patient site have preached the importance of being an advocate for your own care. And they've noted that at times it is necessary to push back against doctors' recommendations if a suggested treatment does not seem right. I just returned from a visit to the U.K., which drove home the importance of that advice...Cancer Screening: Understanding 'Relative Risk'
I have offered before a few reasons for eligible patients to consider not getting screened for lung cancer. I concede, however, that reasonable people might conclude that the potential harms are outweighed by the benefit of reducing one's risk of dying by one-fifth. The next critical question that needs to be asked is: one-fifth of what?Getting Good Care: 'I Wish It Were More Newsworthy. I'm Afraid It's Not.'
Unfortunately, the nitty gritty of getting good care is not really newsworthy, unless we're talking about how poor it is. However, there are opportunities for journalists and writers to report "news you can use" that would be very helpful to many people, and there is a big gap in reporting on most of these necessary tasks...When Your Partner Resists Your Health Care Advice
As a very stubborn and advice-resisting ill partner myself, I can't say if this issue is gender-specific. But I do know it's an issue most couples dealing with illness face, more than once. Here are my two suggestions for what to do when your partner resists your advice...A Doctor's Strategies Helped Mom Pay for Meds
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...How Much Is a Patient's Peace of Mind Worth?
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...Society of Behavioral Medicine Announces Inaugural 'Jessie Gruman Award for Health Engagement'
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.When an Advocate Becomes a Patient
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...Shared Decision Making: Blending Beliefs and Attitudes With Evidence
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...The Goldilocks Approach to Our Health Knowledge: How Much Is Just Right?
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?When a Loved One Is Hospitalized
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...My (Un)prepared Patient Story
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...Look Who's Coming Between You and Your Doctor
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?Medication Adherence: Shift Focus From Patients to System
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...Engagement From Patients' Perspective: Different Than Docs, Employers, Health Plans
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.Hospitalization Increases Risk of Depression and Dementia for Seniors
People over age 65 who have been hospitalized are at significantly greater risk for dementia or depression, finds a new study in General Hospital Psychiatry.Confessions of a Non-Compliant Patient
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...Evidence Mixed on the Usefulness of Echinacea for Colds
For people seeking a natural treatment for the common cold, some preparations containing the plant Echinacea work better than nothing, yet “evidence is weak,” finds a new report from The Cochrane Library.Patients Unlikely to Deliver on the Promise of Price Transparency
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...Antibiotics Don't Prevent Complications of Kids' Respiratory Infections
Antibiotics are often prescribed for young children who have upper respiratory tract infections, however, a new evidence review in The Cochrane Library found no evidence to support this practice.Pre-Surgical Drug May Ease Recovery and Reduce Pain for Kids
A new evidence review from The Cochrane Library found that administering a drug called clonidine before surgery may be a good alternative for controlling post-surgical pain and help reduce a child’s anxiety after surgery.NBC Vastly Exaggerates the Potential Benefits of Lung Cancer Screening
When we talk about a consistently clear pattern of news stories that exaggerate or emphasize benefits while minimizing or ignoring harms, we are talking about stories exactly like this one...What Does It Take to Get 'Better Living Through Medications' These Days?
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?...Pharmacy Staff Frequently Misinform Teens Seeking Emergency Contraception
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.Buck Teeth: Correct Them Once In Early Adolescence
A Cochrane review finds few benefits to a two-stage orthodontic correction for buck teeth in children versus treatment done in one-stage during early adolescence.Patient as 'Captain of the Team'? Block That Metaphor
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.The Costs of Being a Patient and a Doctor
My ultrasound came back "likely benign" with the recommendation that I follow up in six weeks to be sure. Over the next few weeks, I received one bill after another that totaled $1,000. Unable to pay, I felt abandoned by the system to which I had committed my career and did not call to schedule a second ultrasound...Evidence Is Only One Data Point in Our Treatment Decisions
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.For People With Diabetes, Aggressive Blood Pressure Goals May Not Help
For people with diabetes and high blood pressure, keeping blood pressure levels lower than the standard recommended offered no benefits, finds a review in The Cochrane Library.Price Alone Is Not Enough: We Need Effectiveness Information Too
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?Choice: The Secret Sauce of Patient Engagement?
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.Waiting. Again.
The evil of "waiting" is well known among those with illnesses. We spend copious amounts of time in waiting rooms, exam rooms, lab offices. We wait for test results, scan results, to see if treatment is working. I'm in one of those waiting periods right now...Expecting Great Beginnings – and Endings
It tickles me to report that I live with incurable cancer and I am expecting. I am expecting that the cancer will take its toll, that I will need to make choices about my health and care, that I will need the support of my family and that I will need resources.Rethinking Survivorship in the Context of Illness
When I was practicing oncology, I never thought much about the concept of survivorship. I was busy running a research lab and rounding on my hospital's inpatient oncology unit. Until I was diagnosed with cancer myself, I didn't really appreciate how blurry the line is between being a survivor and having the disease...Restricting Food and Fluids During Labor is Unwarranted
Despite the longstanding, widespread practice of restricting women’s food and fluid intake during labor, a large-scale analysis in The Cochrane Library finds it unwarranted and supports women eating and drinking as they please.I Wish I Had Known Earlier...If Your Oncology Team Doesn’t Mention the Topic of Fertility, Then You Should Bring It Up Yourself
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.Robotic Surgery Roundup: Take Me Out to the Ballgame and Much More
Robotic surgery systems are spreading so quickly across the U.S. and across the globe that trying to keep up with the news could become a fulltime beat. Here are just a few nuggets in an attempt to catch up on things you may have missed...Even More Studies You Should Ignore
Back when I was a medical student (in the Cretaceous Period) we were taught that someone once did a study comparing folic acid levels in the blood of cancer patients compared to the blood of healthy patients. The cancer patients had, on average, significantly lower folic acid levels. And the ones with the largest, fastest growing tumors tended to have the lowest folic acid levels. “Aha,” they thought. “Something about folic acid deficiency predisposes them to cancer. We should give folic acid to cancer patients.” Bad idea.I Wish I Had Known Earlier...How Fear Can Get in the Way of Cancer Survivorship Care
A strong emotional response to cancer treatment is common, but I didn’t need to suffer so much or so long from my fears. The lingering intensity of those responses can affect whether and how we attend to the tasks of survivorship.Later Cord Clamping After Birth Increases Iron Levels in Babies
Delaying clamping of the umbilical cord after birth benefits newborn babies, according to a systematic review published in The Cochrane Library.Men Say They Want Prostate Cancer Test, Despite Risks
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.Semper Paratus: Our Decisions About Emergency Care
Sometimes it is clear that the only response to a health crisis is to call 911 and head for the emergency department. But so many times the course of action is less obvious while the demand for some action is urgent.Time’s “How to Cure Cancer” Cover – Worst of the Year?
That’s what journalist Seth Mnookin writes on Slate, stating, further, that it is “wrong, grandiose, and cruel.” He writes, “I haven’t found a single cancer researcher who believes this means we’re on the verge of curing cancer.”Targeting Prescribers Can Reduce Excessive Use of Antibiotics in Hospitals
Giving prescribers access to education and advice or imposing restrictions on use can curb overuse or inappropriate use of antibiotics in hospitals, according to a new Cochrane systematic review.Alcohol and Mental Health Problems a Costly Combo for ICU Patients
People admitted to a hospital ICU with alcohol withdrawal were more likely to be readmitted or die within a year if they had a co-existing mental health condition, finds a new study in Alcoholism: Clinical and Experimental Research.False Alarms and Unrealistic Expectations in Preventive Care
Shortly after we moved to Washington, DC, my wife and I purchased a basic home security system, the kind with a programmable keypad, multiple door alarms and a motion sensor. All things considered, it's hard to argue that the benefits of this preventive measure have outweighed its cumulative harms.Too Much Medical Care: Do We Know It When We See It?
If I didn't object to receiving what I recognized as too much medical care, it should not be a surprise that, according to one study, many inappropriate tests and treatments are being provided more often, not less.Screening Decisions Are Better Informed When Risk Information Is Personalized
Patients’ ability to make genuinely informed choices about undergoing disease screening increases when the risk information that they receive is related to their own personal risk, rather than average risks, according to the results of a Cochrane systematic review.AfterShock: What to Do When the Doctor Gives You - Or Someone You Love - A Devastating Diagnosis
I wrote this book in the hope that this information, these insights, and these experiences will provide its readers with a sense of their choices without making them feel overwhelmed by what they must learn and do after receiving a devastating diagnosis.Drugs to Treat Fibromyalgia Just as Likely to Harm as Help
Among fibromyalgia patients taking either of two commonly prescribed drugs to reduce pain, 22 percent report substantial improvement while 21 percent had to quit the regimen due to unpleasant side effects, according to a new review in The Cochrane Library.Cancer Survivorship: What I Wish I'd Known Earlier
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.Seeking a Second... or Third... Opinion
Is it OK to seek a second (or a third, or a fourth) opinion on your diagnosis? Many people feel uncomfortable with the idea that they are questioning the authority or expertise of their physician.Sorting Out Medical Opinion Overload
Where do you turn when your health care team reaches an impasse, even as an urgent medical problem calls for decisions and choices that you simply don't feel qualified to make?Finding Treatment Information
Want to find out more about the treatments your doctors suggest? Here are some resources for doing your research and comparing your options.Understanding Medical Terms
Doctors can sometimes use unfamiliar and complicated terms to describe your illness and treatment. Here are some resources to help you understand.What Is Watchful Waiting?
Sometimes, the best treatment is to wait and see. Learn more about watchful waiting.Should I Get a Second Opinion?
Different doctors can suggest different diagnoses or ways to treat your illness. Here’s how to decide whether you should get a second opinion.Make Good Treatment Decisions
We must understand what our treatment choices are and their risks and benefits.Comparative Effectiveness Research: Marge Ginsburg, Executive Director of the Center for Healthcare Decisions
In many ways, this country is a victim of its own successes. While medical research and technology has brought phenomenal benefit to many patients, we have grown indiscriminate in when and how we adopt new medical miracles.Comparative Effectiveness Research: Ellen Stovall, Former President and CEO, Currently Senior Health Policy Advisor of the National Coalition of Cancer Survivorship
CER is particularly important in the age of personalized approaches to making decisions about cancer treatments and things like genomic testing. Doctors and patients alike are realizing that there are inadequate studies to assess the clinical utility of new interventions.Prepared Patient: Reducing Your Risk of Medical Errors
Recovering from a knee replacement is difficult under the best of circumstances, but for Herminia Briones, the year following her surgery was filled with unexpected pain, complications and confusion. Her repeated attempts to draw attention to her problems went unheeded, beginning an unfortunate and not uncommon struggle with medical error. Why do medical errors happen and how can you help protect yourself from harm?Getting Lab Results, Just for Doctors or Patients too?
When it comes to getting your lab results, do you want to be the first to know or would you rather wait for your doctor to review them?Understanding Risk: It's All Relative
Risk reduction, relative change, probability, and absolute versus relative risk'?¦how are these terms different from each other and how do they influence people's health care decisions?Guest Blog: Stilettos and Chemotherapy: An Oncologist Reflects on Patient Autonomy
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?A Year of Living Sickishly: A Patient Reflects
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.A Year of Living Sickishly: A Patient Reflects
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.Comparative Effectiveness Research: John Burke on CER and Cystic Fibrosis
John Burke is a respected patient advocate who has participated in more than 30 clinical trials and has been employed as a health care policy expert for over 20 years. This is the first in a series of interviews with patients and patient group advocates about their experiences with and attitudes toward comparative effectiveness research.Using Press Releases for Preliminary Pilot Data
Steven Novella of the Science Based Medicine blog asks, 'If this is a pilot study only and we should not base any firm conclusions on the results, then why the press release?Guest Blog: Is Genomic Medicine Clinically Useful Yet?
The news of my wife Elaine's primary peritoneal cancer 27 months ago began a fevered effort to learn all we could about her disease and our options. 'Gold standard' treatments notwithstanding, the prognosis isn't good. So with molecular profiling, we stand at the leading edge of a hugely promising, alternative paradigm.Still the Best Policy: Being Honest With Your Children About Cancer
While there may be exceptions, in general I firmly believe it's important to be open and honest with children about serious illness (in my case it was cancer). Not only is it important to explain it to them to de-mystify illness, it can also be crucial that children be aware of the condition in case of emergency.Selling Dental Services Like Chevrolets
Mailers from a New York City dentist piqued my interest last week offering zero percent financing ' the same come-on that car manufacturers have used for years to entice you to buy Chevys and Toyotas.Shying Away From Talking About Risks
Recently, I wrote a piece in The Atlantic about how doctors and patients talk about the risks of chemotherapy (or not), including the risks of causing another form of cancer. If you get chemotherapy, you have the right to know about these risks, and to ask your doctor about them.Guest Blog: The End of Life Horror Show: We Can Do Better
Recently, New York Magazine published an agonizing first person cover story by Michael Wolff, 'A Life Worth Ending,' about the terrible choices and harsh reality of illness at the end of his mother's life. The summary slug for the piece says it all: 'The era of medical miracles has created a new phase of aging, as far from living as it is from dying. A son's plea to let his mother go.'Guest Blog: Old Puzzles, Busy Guys and New Science
I am a two year cancer survivor, in remission, feeling good, and focusing on a quality of life that I perhaps took all too much for granted in the past. But like all cancer survivors, I worry about what may be happening inside my body...Operating Theater: Magnificent New Hospitals Do Not Equal Quality Care
The pianist was playing Chopin in the beautiful but deserted four-story lobby of the new hospital where my father was being cared for. The contrast between that lovely lobby and the minimal attention my dad received over the weekend, combined with a report about the architectural 'whimsy" of a new hospital at Johns Hopkins make me cranky.Are You Afraid of Being Labeled a Difficult Patient?
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.Advice Urges Wider Sharing of Heart Care Decisions
The goal is "not only living long, it's living well. People often make decisions about the 'long' without even considering the 'well,'" said Jessie Gruman, president of the Center for Advancing Health, a patient advocacy group.Guest Blog: Illness is Not Discrete. On Feeling Sick, and Not Knowing What's Next
A few days ago, the room around me started spinning. I wished I were Jack Kerouac , so it wouldn't matter if my thoughts were clear but that I tapped them out. Rat tat tat. Or Frank Sinatra with a cold. You'd want to know either of those guys, in detail. Up-close, loud, even breathing on you. You'd hire 'em. Because even when they're down, they're good. Handsome. Cool, slick, unforgettable. Illness doesn't capture or define them.Guest Blog: The Trouble with Trust
A good friend with a chronic healthcare condition has over the last few years had a series of invasive procedures that have still not solved her problems.Guest Blog: How Information Can Help Conquer Fear
I spent one day last week at MD Anderson Cancer Center in Houston...The waiting room is sizeable but quickly becomes jammed with people...Some look the picture of health. Others wear masks and are pushing IV poles'We're all there because we have a serious diagnosis and we want to see doctors who are among the best. The faces show a mixture of fear, courage and confidence.Worried Sick or Worried Well
Worry can be an all too familiar and unwelcome companion to those with illness. Here, three people with three different worrisome health care experiences describe what it's like.Lessons from the Year of Living Sick-ishly
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.1st Person: Cancer Diagnosis Can't Squash His Spirit
Twelve years ago, Syd Ball's local urologist told him that prostate-removal surgery and radiation therapy were his only options to treat his early stage prostate cancer. After a second opinion from a urologic oncologist at Johns Hopkins University, Syd participated in active surveillance to avoid the serious side effects associated with treating prostate cancer.1st Person: After Years of Treatment, a Time to Wait
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.1st Person: My Post-Op Problems Were Brushed Aside
Instead of enjoying a full recovery, Herminia Briones experienced distressing new symptoms the year following her knee-replacement surgery.How People's Stories Support Evidence-Based Care
I was recently asked how evidence from clinical trials can possibly overcome powerful emotional stories of "saved lives." My answer: evidence-based medicine's supporters must fight anecdotes with anecdotes. Statistics show that, while some are saved, many people are temporarily or permanently injured as a result of screenings/testings - and their stories matter too.Guest Blog: When Patients Demand Treatments That Won't Work
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?Patient Engagement: Expert Carol Alter Talks about Challenges
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.Guest Blog: What's All That Other Stuff In My Medicine?
The perception from many consumers (based on my personal experience) seems to be that products are inferior if they contain non-drug ingredients. By this measure, drug products are problematic...The Formidable Complexity of Making (Some) Health Decisions: Book Review
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.The Whole Package: Improving Medication Adherence
Over-the-counter and prescription drugs are sold with instructions either on the package itself or in accompanying materials. Alas, research has shown that many people find this medication information confusing and thus do not take their medications correctly ' or at all. Can interventions like drug fact panels, reminder packaging and "integrated" health systems help solve the problem?1st Person: Acute Pain: Sudden Impact
Dr. Jan Adams has had more than her share of painful experiences. A retired general practitioner and mother of two who practiced 'womb-to-tomb' medicine, she conducted humanitarian work around the world, notably with medical clown Patch Adams (no relation).Informed Consent & Doctor-Patient Communications in the News
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.Ask Me if I Washed My Hands and Drank Gatorade in the Last Hour
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.Matters of the Heart
When her mom is being treated for a newly diagnosed heart condition, medical student Katherine Ellington learns first-hand how her medical training applies to real life. This is the second in a series of three posts.Guest Blog: Summer Palpitations
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.Taking a Closer Look at Chronic Pain
This June, an Institute of Medicine report estimated that chronic pain affects 116 million Americans. Here, Tara Parker-Pope, Maia Szalavitz, and Elizabeth Cohen offer their perspectives on the findings. Kelly Young, RAWarrior, adds her personal experience, too.Guest Blog: Laurel & Hardy and Prostate Cancer Chemoprevention
A drug currently used for benign prostate problems is now being pushed for prostate cancer prevention. But the FDA warns there's evidence it may actually result in more advanced cancers.Guest Blog: Evidenced-based Medicine or Easy-bake Oven: Tension Between Evidence and Reality
This post was inspired by the article "Patient Advocates: Flies in the Ointment of Evidenced Based Care" at the Health Affairs Blog. Patient advocacy and evidenced-based medicine are both intimately entwined with several matters in rheumatological care, but first a word about flies. Patient advocates probably are flies in the ointment, and there would certainly be no flies in a perfect world. But in a perfect world, we wouldn't be sick. In a perfect world, doctors could comprehend our pain.Guest Blog: Can the Blind Lead the Seeing?
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.Guest Blog: The Confusing Morass of Medical Evidence
Practitioners of evidence-based medicine use published evidence from the medical literature to guide them as they try to provide the best care for each patient. But sometimes the medical literature just feels like a big morass.Too Much Information in Medical Decision Making?
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.Guest Blog: Niseritide, the 'Lost Decade', and the Pinto
Eric Topol, MD wrote an interesting commentary in the July 7, 2011 issue of the New England Journal of Medicine, titled 'The Lost Decade of Nesiritide.' Nesiritide is a drug for heart failure symptoms (e.g., shortness of breath) that was approved by the FDA in 2001. Since that time, according to Dr. Topol, 'well more than $1 Billion was wasted on purchasing the drug.'Drug Labeling Inside the Box
Reading those lengthy package inserts about the medicines you're taking is a bit like eating peas. You know they are good for you, but your gut says 'yuck.' So odds are you don't bother with all that teensy-tiny fine print, but just take the medicine and hope for the best.1st Person: Pain: a Constant Companion
Teresa Shaffer has suffered from chronic pain from degenerative joint disease since she underwent six months of bedrest during her third pregnancy.1st Person: I Think So Too
Breast cancer survivor, Lisa Bonchek Adams, blogs about life-changing events including a cancer diagnosis, the sudden death of a family member, and having a child with medical challenges. She combines medical, psychological, and sociological viewpoints to these and other topics. You can read this post and follow her at LisaBAdams.com.The Hidden Secrets of Evidence
I have a fear. My fear is that the public has an unrealistic view of medicine and the science behind it.Inside Health Care: Watchful Waiting
Watchful waiting is more than 'doing nothing.' We've collected recent blogs on prostate cancer & watchful waiting from Laura Newman at Patient POV, the NYTimes New Old Age blog, and Gary Schwitzer of HealthNewsReview.Appointment in Samarra*: Our Lives of Watchful Waiting
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.1st Person: Cancer Diagnosis Can't Squash His Spirit
Twelve years ago, Syd Ball's local urologist told him that prostate-removal surgery and radiation therapy were his only options to treat his early stage prostate cancer. After a second opinion from a urologic oncologist at Johns Hopkins University, Syd participated in active surveillance to avoid the serious side effects associated with treating prostate cancer.1st Person: After Years of Treatment, a Time to Wait
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.Prepared Patient: Watchful Waiting: When Treatment Can Wait
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.Inside Health Care: Show Me the Evidence
Being actively engaged in your health care means understanding how the care you are receiving will benefit you. We expect the care we receive and the health advice we are offered to be evidence based, using the best research available. Journalists, a researcher, and a doctor call attention to common practices where evidence is lacking.Patient-Centered Care: From Exam Room to Dinner Table
Only one in 10 respondents to a national survey could estimate how many calories they should consume in a day. Seventy-nine percent make few or no attempts to pay attention to the balance between the calories they consume and expend in a day.These and other piquant findings from the online 2011 Food and Health Survey fielded by the International Food Information Council Foundation (IFIC) struck home last week as I smacked up against my own ignorance about a healthy diet and the difficulty of changing lifelong eating habits.Watchful Waiting: When Treatment Can Wait
For some patients, delaying treatment while regularly monitoring the progress of disease may benefit them more than a rush to pharmaceutical or surgical options.When Doctors Own or Lease MRI, Back Scans and Surgery More Likely
When doctors can self-refer for MRI, patients are more apt to receive scans – and even surgery – for low back pain.How the Cost of Health Care Creeps Up and Up
In a previous post, I talked about what happens when a radiology practice goes digital for mammography, even though there's scant evidence that more-expensive digital is better than cheaper film for detecting cancer in older women. Yet the higher-priced costly procedure is winning out. That's pretty much the norm for U.S. health care, for instance, when ThinPrep replaced the conventional method for doing Pap smears. I used to pay $9 for the test; the one I had last summer cost $250.Can Good Care Produce Bad Health?
For those of you who haven't yet heard, I have recently been diagnosed with Stage IV inflammatory breast cancer. This rare form of breast cancer is known for its rapid spread. True to form, it has metastasized to my spine. This means my time is limited. As a nurse, I knew it from the moment I saw a reddened spot on my breast and recognized it for what it was.A Valentine to Shared Decision Making
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.Those Clever Drug Companies, Again
If prizes were given for ingenious marketing, drug companies would win top honors. Like most businesses, they want to expand markets'that means getting you to buy more drugs whether you need them or not. Their appetite for finding new ways of doing that is insatiable.Getting Through the Shock of a Devastating Diagnosis
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.Perseverance
This week's roundup features a collection of patient voices from around the web including: Winner of the reality TV show the Amazing Race, Nat Strand, RA Warrior Kelly Young, and alias blogger WarmSocks.CT Scans
Our latest Prepared Patient, Medical Testing: You Need Answers, offers guidance on how to talk to your doctor about medical tests and what to consider before and after the test. Here are related thoughts from other blogs-Dr. John Schumann of GlassHospital, Dr. Michael Kirsch of MD Whistleblower, and Anna Sayburn on Consumer Reports Health Blog. Recent feature articles on medical tests from The Wall Street Journal & the ACPHospitalist are also included.Why Medical Testing Is Never a Simple Decision
A women goes from healthy to heart transplant patient in just a few weeks. Could this have been avoided? True positives, false positives, false negatives, true negatives'how can we understand and use our test results to make good treatment decisions?Good Idea, Bad Execution: Dosing Errors, A Preventable Harm
Dosing errors are among the most common and most preventable causes of adverse drug events in children. Why? Despite the prevalence of dosing errors, there has been little evidence telling us what health professionals, or parents, can do better. Until now'Popping a Pill Can Help Some Alcoholics Curb Drinking
A little-used medication can help treat alcoholism, an evidence review confirms, when combined with counseling, 12-step programs or other interventions.Conversation Continues: Living with Chronic Illness - Julian Seifter's Wise Guidance
Jim Sabin, MD, offers his take on Dr. Seifter's insights about living with a chronic illness.Book Review: Bad Science by Ben Goldacre
I've been following evidence-based medicine for many years and I've been appalled by the way it is playing out. We have pay-for-performance that does not understand that the reliability we are after is not in reliably (read blindly) applying a guideline to a patient population, but rather reliably considering how the evidence applies to the individual in a health care interaction. We have guidelines that are based on expert opinion, often influenced by drug company funding, or based on bad science. And we have a news media that seems unable to present medical findings in a balanced and understandable way.Integrating Patient Experience into Research and Clinical Medicine: Towards True Personalized Medicine
We advocate science-based medicine (SBM) on the Science-Based Medicine blog. However, from time to time, I feel it necessary to point out that science-based medicine is not the same thing as turning medicine into a science. Rather, we argue that what we do as clinicians should be based in science. This is not a distinction without a difference. If we were practicing pure science, we would be theoretically able to create algorithms and flowcharts telling us how to care for patients with any given condition, and we would never deviate from them.Conversation Continues: Health News We're Watching
Slate picks up on news about the recent Lung Cancer CT Scan study, which was also covered by Gary Schwitzer and others, in this Explainer column: Full-Body Scam: Should you ask your doctor to CT scan you from head to toe?Health News Stories We're Watching:
Two new posts by Gary Schwitzer on the Health News Review Blog this week. One on the promotion of CT screening after the release of the recent Lung Cancer CT scan study and the other on new investigative reporting by ProPublica. Both evolving health stories that touch on key hot health care reform debates: Comparative effectiveness research, entitlement programs, marketing to the public, and more.Guest Blog: George Karl's Cancer Comeback
To my mind, George Karl, veteran NBA basketball coach is a winner. He's tenacious. I saw that in him when, in the early '70's, he played basketball in college at The University of North Carolina at Chapel Hill when I was a student there too. Those were the glory years of bigger than life coach Dean Smith and George was one of his recruits. George didn't disappoint then as the team played in the Final Four and won the NIT Tournament. George was scrappy.When Someone Close Has Cancer...
Update on Jessie's status and some words of wisdom from her article, 6 Ways to Help When Someone Has Cancer, originally published in an October 2008 issue of Parade magazine.Another Devastating Diagnosis to Face
I have stomach cancer and will undergo surgery to remove part or all of my stomach today.Do Scientists Understand the Public? And Does It Matter?
Exploring these questions is relevant to all who are working to support people's engagement in their health and health care. They are also relevant to the debate about the value of comparative effectiveness research. Science journalist Chris Mooney reports a couple of provocative points in this account of four meetings on the topic sponsored by the American Academy of Arts and Sciences over the past year.The People and Evidence-Based Medicine: We are All Above Average
Problems with evidence-based guidelines and comparative effectiveness research all have at their core the conflict between averages and individuals.Antibiotic Resistance, Evidence-Based Medicine and the End of the World as We Know It
Delivering evidence-based medicine is a deceptively elegant and simple goal.' But new findings about the increase in antibiotic resistance challenge us to consider just how complicated and challenging it is to actually define and deliver evidence-based care.'New Solid Evidence Showing the Impact of Physician Communication on Our Engagement in Care
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.Patient-Centered Care Should Minimize Post-Surgical Surprises
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.Risky Treatment Decisions: The Devil and the Deep Blue Sea
Tuesday's New York Times ran a story about the unreliability of the tests and the variation among laboratory standards that determine the potential effectiveness of new targeted cancer treatments. Linda Griffin, a physician with breast cancer, described the series of treatment decisions she made with her doctors about whether or not to take the very expensive, fairly disruptive and potentially very effective drug, Herceptin, based on a genetic test that was inconclusive and further, which produced different findings when the same material was retested.Evidence and Trustworthy Intermediaries
2009 was not a good year for the public's understanding of evidence.Chiropractic Treatment Offers Some Relief for Early Low Back Pain
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