PREPARED PATIENT BLOG

Patients and experts explore what it takes to find good health care and make the most of it.

Jessie C. Gruman, PhD, was founder and president of the Center for Advancing Health from 1992 until her death in July 2014. Her experiences as a patient — having been diagnosed with five life-threatening illnesses — informed her perspective as an author, advocate and lead contributor to the Prepared Patient Blog. Her book, AfterShock, helps patients and caregivers navigate their way through the health care system following a serious or life-threatening diagnosis. The free app, AfterShock: Facing a Serious Diagnosis, offers a pocket guide based on the book. | More about Jessie Gruman


Patient Engagement: Here to Stay

Jessie Gruman | July 1, 2014
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...

All You Do Is Complain About Health Care

Jessie Gruman | June 25, 2014
"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...

Don't Let the Sun Shine Down on Me (It's Too Complicated!)

Jessie Gruman | June 18, 2014
I'm impressed by how much we struggle with seemingly simple health decisions when faced with sorting through too much information. Every week we view diverse arrays of products with health, convenience and cosmetic claims competing for our attention. Think yogurt, Gatorade, running shoes, breakfast cereal...Given the ubiquity of such products and the swirl of marketing and science- or non-science-based information surrounding each, I'm wondering three things...

Don't Forget the Hefty Price We Pay to Engage in Health

Jessie Gruman | June 12, 2014
Media-fueled flip-flops and research breakthroughs on lifestyle and health behaviors are wearing down my usual patience with the provisional nature of science. Even simple dietary recommendations like lower fat/salt recommendations have become complicated as old truisms are overturned by new evidence. So I'm asking: To whom should I turn for meaningful guidance about modifying my risk for illness and boosting my health?

Entitlement: The Overlooked Dimension of Patient Engagement

Jessie Gruman | June 4, 2014
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...

Getting Good Care: 'I Wish It Were More Newsworthy. I'm Afraid It's Not.'

Jessie Gruman | May 21, 2014
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...

Pendulum Swings Between Personalized Care and Fixes That Benefit All

Jessie Gruman | May 14, 2014
"All patients are alike. This one complains about the same things that the last one did." "Every patient is unique. We can never find a way to make each one of them happy." This public health paradox is alive and well today, particularly when trying to improve outcomes attributable to patient engagement. The question is, what aspects of care need to be customized to individual needs and what can be delivered in a standardized fashion to all of us?

What Is Dignity and Does It Matter to Patients?

Jessie Gruman | May 7, 2014
At a recent conference about patient engagement in health care, the word "dignity" was used over 50 times in the first 90 minutes, and I was left with a little pile of meaningless sound where I had expected to find something important. Since then, I have been on hyper-alert for "dignity"...

Are We Cowboys or Managers of Our Chronic Conditions?

Jessie Gruman | April 23, 2014
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...

Self-Monitoring Health IT Falls Short of Providing the Information We Need

Jessie Gruman | April 16, 2014
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...

How to Make the Most of Your Doctor Visit

Jessie Gruman | April 9, 2014
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...

Working With Your Doctor's Office

Jessie Gruman | April 2, 2014
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...

The Goldilocks Approach to Our Health Knowledge: How Much Is Just Right?

Jessie Gruman | March 26, 2014
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?

My (Un)prepared Patient Story

Jessie Gruman | March 19, 2014
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...

Common Bias Ignored: Patients and Families Lose

Jessie Gruman | March 12, 2014
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...

Medication Adherence: Shift Focus From Patients to System

Jessie Gruman | March 5, 2014
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

Jessie Gruman | February 26, 2014
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.

Patients Unlikely to Deliver on the Promise of Price Transparency

Jessie Gruman | February 19, 2014
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...

Normal Care Hours Don't Work for Workers With Chronic Conditions

Jessie Gruman | February 12, 2014
It looks like an airport lounge without the rolling suitcases. There are about 20 of us fiddling with our phones or reading the newspaper, waiting to meet with our doctor for follow-up or monitoring visits. All of us are between the ages of 20 and 70 and all of us are dressed for success – or at least for our jobs. What's wrong with this picture? Why are employed adults spending a busy Wednesday morning waiting (and waiting) for our health care appointment when we should be working?

Is Health Information Privacy 'None of Our Business'?

Jessie Gruman | February 5, 2014
Survey after survey finds that we are concerned about the privacy of our health and health care information. But most of us are confused about what this actually means. We struggle to imagine the range of scenarios in which we lack or lose privacy. And responses from health care stakeholders don't bode well for any real institutional or commercial investment in ensuring that our information is secure...

The Limits of Physician Referral in Finding a New Doctor

Jessie Gruman | January 29, 2014
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...

What Do I Tweet – and Why?

Jessie Gruman | January 22, 2014
Twitter has figured prominently in the heated discussion about Emma and Bill Keller's respective editorials about Lisa Bonchek Adams. I have followed Lisa for a long time and greatly admire her thoughtful, highly personal tweets about the ups and downs of what it takes for her to face the challenges of metastatic breast cancer. In comparison, I am a different type of tweeter, posting a weekday stream of tweets aimed at addressing generally the subject that Lisa talks about so personally: finding and making the best possible use of health care...

What Does It Take to Get 'Better Living Through Medications' These Days?

Jessie Gruman | January 15, 2014
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?...

What Does Team-Based Care Mean for Patients?

Jessie Gruman | January 8, 2014
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...

The N=1 Problem of the Patient Representative

Jessie Gruman | December 18, 2013
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...

Patient as 'Captain of the Team'? Block That Metaphor

Jessie Gruman | December 11, 2013
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.

Seven Things I Wish I'd Known Earlier About Cancer Survivorship

Jessie Gruman | December 4, 2013
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...

Do “Experts” Value Patient and Family Input?

Jessie Gruman | November 20, 2013
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?

Evidence Is Only One Data Point in Our Treatment Decisions

Jessie Gruman | November 13, 2013
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.

We Are the New (Free) Health Care Workforce

Jessie Gruman | November 6, 2013
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...

My BlogTalkRadio Interview: Patient Engagement

Jessie Gruman | October 30, 2013
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.

Price Alone Is Not Enough: We Need Effectiveness Information Too

Jessie Gruman | October 23, 2013
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?

Jessie Gruman | October 16, 2013
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.

Beware of Claims That Patient Engagement Cuts Costs

Jessie Gruman | October 9, 2013
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...

Accuracy of Health News: Pressure on Journalists, Consequences for Us

Jessie Gruman | October 2, 2013
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?

What Is the Image of Illness in the Media? Does It Matter?

Jessie Gruman | September 25, 2013
Have you noticed that the images of most sick people on TV, in drug ads and on health insurance websites look pretty good? There is a big, diverse herd of us out here who are ill and who don't see our experience realistically portrayed by the media. So what?

How Do We Know If the Price Is Right (If We Can't Find Out What the Price Is)?

Jessie Gruman | September 18, 2013
For most of us, the "cost" of health care isn't what brings us the most anxiety. It's when we're patients or helping a loved one find care that so many of us are deeply concerned about the price of our health care: what we – personally, individually – pay to acquire the services, drugs and devices we need...

Notes on Adherence: When Do I Feel Like a Patient?

Jessie Gruman | September 11, 2013
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.

I Wish I'd Known Earlier...Each New Diagnosis Has Unique Demands

Jessie Gruman | August 28, 2013
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...

I Wish I’d Known Earlier...Survivorship Care Is a Mutual Enterprise

Jessie Gruman | August 21, 2013
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…

I Wish I’d Known Earlier...I Still Need a Primary Care Provider Since Most Headaches Aren’t Brain Tumors

Jessie Gruman | August 14, 2013
My experience has taught me that once active treatment is over, regardless of my tendency to regard every lingering ache or pain as a recurrence, if I’m getting my survivorship care from my treating oncologist or other survivorship specialist, I have to find myself a primary care clinician who knows my health history. Why?

I Wish I Had Known Earlier...To Cast a Cool Eye on Prognostic and Risk Statistics

Jessie Gruman | August 7, 2013
For many of us, receiving a cancer diagnosis often includes hearing some statistics about the average or mean survival of people with this stage of this type of cancer. The end of active treatment may arrive accompanied by additional statistics. It is difficult, even for those schooled in the meaning of such numbers, to figure out what they mean for an individual.

I Wish I Had Known Earlier...That For Many of Us, Symptoms and Late Effects Accumulate Rather Than Fade Over Time

Jessie Gruman | July 31, 2013
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.

I Wish I Had Known Earlier...Not Every Oncologist Can or Should Deliver Survivorship Care

Jessie Gruman | July 24, 2013
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.

I Wish I Had Known Earlier...How Fear Can Get in the Way of Cancer Survivorship Care

Jessie Gruman | July 17, 2013
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.

What I Wish I’d Known Earlier about Cancer Survivorship

Jessie Gruman | July 10, 2013
I have been treated for five different cancer diagnoses. Some would call me a cancer survivor. I call me lucky...

Health Is Difficult When Solo: Will More e-Caregivers Help?

Jessie Gruman | June 26, 2013
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.

Consumer Health Information: Patient Engagement and Dead Cats

Jessie Gruman | June 19, 2013
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.

Semper Paratus: Our Decisions About Emergency Care

Jessie Gruman | June 12, 2013
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.

Fire My Doctor? Not So Fast

Jessie Gruman | June 5, 2013
Last week, a friend told me that her mother had been fired as a patient by her primary care physician in a letter she received in the mail. Last week, I fired my oncologist by email. My friend and I both wrestled with accepting that, in fact, this relationship needed to end.

Filling Out the Patient Chorus: Are We ONLY Victims, Heroes and Champions?

Jessie Gruman | May 29, 2013
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?

Are Patient Navigators Necessary? Or Just Nice?

Jessie Gruman | May 22, 2013
I know that each time I have received a cancer-related diagnosis, I felt like I had been drop-kicked into a foreign country: I didn't know the language, I didn't understand the culture, I didn't have a map and I desperately wanted to find my way home.

Is Patient Engagement a Set-Up for Failure?

Jessie Gruman | May 15, 2013
“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.

How Easily We Can Misinterpret the Benefits of Patient-Centered Innovation!

Jessie Gruman | May 8, 2013
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.

The True Grit-tiness of Sharing Health Care Decisions with Our Doctors

Jessie Gruman | May 1, 2013
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.

Bad Language: Words One Patient Won't Use (and Hopes You Won't Either)

Jessie Gruman | April 24, 2013
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.

Whose Patient Engagement Goals Are We Talking About?

Jessie Gruman | April 17, 2013
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?

Has Patient Engagement Stalled?

Jessie Gruman | April 10, 2013
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 Do I Tweet – and Why?

Jessie Gruman | April 3, 2013
Who would have thought that Twitter, this tiny aperture – a mere 140 characters – could connect me with so many smart, feisty, tough people who share, amplify, and improve on my efforts to spread carefully chosen health and health care content through their responses, retweets, modified tweets and acknowledgements? Here’s why I tweet what I tweet...

Comparative Effectiveness Research: Louise Vetter, CEO of the Huntington’s Disease Society of America

Louise Vetter | March 27, 2013
There are 30,000 Americans alive today with symptoms of HD, and an additional 200,000 are at risk...Generally, we see CER as an important priority to inform clinician decision making.

What Do Patients Need From Clinicians?

Jessie Gruman | March 20, 2013
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.

Comparative Effectiveness Research: Marty Tenenbaum, Founder & Chairman of Cancer Commons

Marty Tenenbaum | March 13, 2013
There is a large disparity of information across the medical world. If you consult 6 doctors, you’ll likely get 6 opinions about how to treat your cancer. And 5-year survivals may vary as much as 50%. This is inexcusable.

Comparative Effectiveness Research: Ann Fonfa, President and Founder of the Annie Appleseed Project

Ann Fonfa | March 6, 2013
To me it’s obvious that Comparative Effectiveness Research (CER) is a good way to get to meaningful patient outcomes. It compares real things that will make a difference. Right now we have efficacy without effect. In my field we are worried about drug-herb interactions; what about drug-drug interactions? I’m looking forward to CER really drilling down to what works for patients in a meaningful way.

The Team Will See You Now...What Team?

Jessie Gruman | February 27, 2013
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.

Comparative Effectiveness Research: Jennifer Dingman, Founder of PULSE

Jennifer Dingman | February 20, 2013
I got involved in patient safety many years ago after I lost my mom in early 1995 due to medical errors. While my mom was in a coma for seven weeks, I met other families in ICU. Many of them – the majority – had unanswered questions.

An Open Letter to Mobile Health App Developers and Their Funders

Jessie Gruman | February 13, 2013
Two recent experiences left me ornery and impatient about the current state of mobile health apps. Why haven’t they just taken off?

An Accidental Tourist Finds Her Way in the Dangerous Land of Serious Illness

Jessie Gruman | February 6, 2013
Health Affairs 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.

Measuring Meaning: Tough to Track Important Talks

Jessie Gruman | January 30, 2013
We do better when we have meaningful conversations with our clinicians about our health care. Proposals to require and document that such conversations take place at strategic points are growing. Here’s a cautionary tale.

Comparative Effectiveness Research: Jeffrey Carroll, Host of HDBuzz

Jeffrey Carroll | January 28, 2013
As a community, our focus is on the discovery of disease-modifying treatments. This is the burning desire of everyone in the [Huntington’s disease] community.

Take My Damn Data. Please.

Jessie Gruman | January 23, 2013
Many people assume that their test results will be automatically sent to the right doctors and don’t bother to request that it be done.

Medical Errors: Will We Act Up, Fight Back?

Jessie Gruman | January 16, 2013
We've been warned about the impending patient revolution. We will not be ignored. And we'll force meaningful change. After all, as the recent documentary How to Survive a Plague reminds us, the gay community and others mobilized themselves during the AIDS crisis to great effect. The same thing is possible today, right?

Comparative Effectiveness Research: Helen Haskell, Founder of Mothers Against Medical Error

Helen Haskell | January 15, 2013
Comparative effectiveness research will be transformational if done properly. The critical thing is that it be done without built-in bias.

Comparative Effectiveness Research: Marge Ginsburg, Executive Director of the Center for Healthcare Decisions

Marge Ginsburg | January 9, 2013
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

Ellen L. Stovall | January 7, 2013
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.

Comparative Effectiveness Research: Joyce Dubow of AARP

Joyce Dubow | December 19, 2012
We need to do better if we want people to have high-quality care that is provided in a way that is safe and makes the best use of scarce health care resources. CER that is relevant, timely and rigorous is fundamental to achieving these objectives.

Comparative Effectiveness Research: David Shern, Past President and CEO of Mental Health America

David Shern | December 12, 2012
When we started focusing on CER, the big concern was the head-to-head trials of drugs and devices and the naive application of their findings to insurance reimbursement policies. Our ultimate fear was that access to medications would be restricted.

Comparative Effectiveness Research: Richard Birkel of the Center for Healthy Aging & NCOA

Richard Birkel | December 5, 2012
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.

Comparative Effectiveness Research: Angela Ostrom of the Epilepsy Foundation of America®

Angela Ostrom | November 29, 2012
Epilepsy is a complex disease. An optimal quality of life and seizure control for the person with epilepsy – so that they can be a fully productive member of society – is our goal. Our main concern about CER and our constituents is that one treatment may provide a high quality of life with seizure control and few side effects for many but not for all patients.

Comparative Effectiveness Research: Donna Cryer of the American Liver Foundation

Donna Cryer | November 20, 2012
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.

Comparative Effectiveness Research: Perry Cohen of Parkinson Pipeline Project

Perry Cohen | November 14, 2012
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.

Comparative Effectiveness Research: Arthur Levin of the Center for Medical Consumers

Arthur Levin | November 7, 2012
We're trying to figure out if CER is just more of the same. Health policy has a love affair with old wine in new bottles, that is, rebranding old solutions with new acronyms. Because patient-centered care and engagement are fashionable at the moment, is PCOR merely a way to dress up CER to be more exciting and attractive (or palatable)?

Comparative Effectiveness Research: Mary Andrus of Easter Seals

Mary Andrus | October 31, 2012
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.

When Your Doctor Says, “I Have Bad News”

Jessie Gruman | October 30, 2012
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.

Comparative Effectiveness Research: Maureen Corry of Childbirth Connection

Maureen Corry | October 24, 2012
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.

Dealing With Cancer

Jessie Gruman | October 23, 2012
I was interviewed, along with several other cancer survivors, for the October issue of Washingtonian Magazine. "Dealing With Cancer" by Karina Giglio, offers advice on how to choose your doctors, what websites you can trust, how to help a friend with cancer and other resources to help you or a loved one get through treatment.

Comparative Effectiveness Research: Bill Vaughan of the National Committee to Preserve Social Security and Medicare

Bill Vaughan | October 17, 2012
When you look at what can be done to save Medicare with this growing aging population, what do you do? One of most important things to do is to quit paying for things that don't work or don't work very well.

Comparative Effectiveness Research: Venus Gines of Dia de la Mujer Latina

Venus Ginés | October 10, 2012
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.

Comparative Effectiveness Research: John Santa of Consumer Reports

John Santa | October 3, 2012
When Consumer Reports (CR) first saw the rising national emphasis on Comparative Effectiveness Research (CER) three years ago, we were pleased: CER is what CR does. However, when it comes to health, we realized how difficult it is to do CER: CR would need to rely on good research done by others.

Comparative Effectiveness Research: Gail Hunt of the National Alliance for Caregiving

Gail Hunt | September 26, 2012
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.

Comparative Effectiveness Research: Judy Norsigian of Our Bodies Ourselves

Judy Norsigian | September 19, 2012
Judy Norsigian is one of the founders of Our Bodies Ourselves (OBOS), a nonprofit public interest organization practicing women's health education, advocacy and consulting, and has served as its executive director since 2001. This is the second in a series of interviews with patient and consumer group leaders about their experiences with and attitudes toward comparative effectiveness research.

A Year of Living Sickishly: A Patient Reflects

Jessie Gruman | September 13, 2012
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.

How Do We Know If the Price is Right (If We Can’t Find Out What the Price Is)?

Jessie Gruman | August 29, 2012
“Health care costs are sky-rocketing!” “The percentage of the U.S. GDP devoted to heath care costs is the highest in the world.” “The cost of Medicare is unsustainable.” For most of us, the cost of health care (i.e., the dollars required by the system to produce and deliver care) isn’t what brings us the most anxiety.

Online Health Information Finally Clicks

Jessie Gruman | August 22, 2012
Kristen Gerencher of The Wall Street Journal’s MarketWatch, recently interviewed me about internet users and online health information.

Comparative Effectiveness Research: John Burke on CER and Cystic Fibrosis

John Burke | August 15, 2012
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.

The Lemon of Illness and the Demand for Lemonade – “The Open Mind” Interview

Jessie Gruman | August 8, 2012
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.

Home Alone? Discharge Planning Starts at Hospital Admission

Jessie Gruman | August 1, 2012
“...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.

Right-Sizing Health IT: Where’s My App?

Jessie Gruman | July 25, 2012
The online migration of health information services and technologies (IT) has been a popular focus for IT investors and developers recently. But we have not been as captivated by their efforts as we have been by those of, oh, Facebook, say. Or Lady Gaga's fan site. Or eBay. In fact, most of us are reluctant to make use of the thousands of helpful health IT tools launched to help us get healthier, take care of ourselves and make good use of our health care.

The Art of the Fail, Open Table Surveys, and Increasing Our Engagement in Health Care

Jessie Gruman | July 18, 2012
In the past two days I have filled out two post-dining surveys from Open Table, and it occurred to me that it would be great if there were something similar that could provide the immediate guidance we need to participate in our care.

Slow Leaks: Missed Opportunities to Encourage Our Engagement in Our Health Care

Jessie Gruman | July 12, 2012
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.

Six Things Patients Want from Social Media

Jessie Gruman | June 27, 2012
A few weeks ago, I spoke at the Connecting Healthcare + Social Media conference in New York about what we patients want from health social media. Michelle McNickle, New Media Producer for Healthcare IT News wrote the following piece summarizing my talk and the '6 things patients want from social media.'

A Physician's Perspective on Shifting to Palliative Care: Help Us Change our Pace

Jessie Gruman | June 20, 2012
Last week's essay, Shifting to Palliative Care: Help Us Change our Pace, provoked the following commentary from my friend and colleague, James Cooper -- to which I responded.

Shifting to Palliative Care: Help Us Change our Pace

Jessie Gruman | June 13, 2012
It is easy to understand why the medical machine the clinicians, the tests and assorted medical procedures is poised to provide constant often heroic interventions to save and prolong life.

The Insidious Power of (d-i-s)-R-E-S-P-E-C-T

Jessie Gruman | June 6, 2012
It's difficult to imagine that professionals working in a practice or department or unit where they are constrained by their own colleagues misbehavior are going to have the energy to invite us to learn about and share in decisions about our treatment...

Operating Theater: Magnificent New Hospitals Do Not Equal Quality Care

Jessie Gruman | May 23, 2012
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.

Advice Urges Wider Sharing of Heart Care Decisions

Jessie Gruman | May 16, 2012
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.

What's Engagement Now? Expert Sarah Greene Discusses Emerging Challenges

Sarah Greene | May 9, 2012
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.

I'm Not Taking That Drug if it Makes Me Itch! More on Medication Adherence

Jessie Gruman | May 2, 2012
Our unwillingness to take our medicine as directed is often mistakenly viewed by clinicians and researchers as a sign that we are not engaged in our care. Baloney. Many of us would be perfectly happy to do so were it not for those pesky side effects.

Hospitals, Practice Administrators and Clinicians: You Gotta Learn to Love Patient Ratings

Jessie Gruman | April 25, 2012
You are increasingly being held accountable for the outcomes of the health care you deliver. Pay for performance; shared savings in ACOs; public report cards'the list of strategies to monitor and measure the effects of your efforts is lengthening. Many of you seem dismayed by the increased weight accorded to the patient experience of care ratings embedded in most of these programs.

What's Engagement Now? Expert Kalahn Taylor-Clark Discusses Emerging Challenges

Kalahn Taylor Clark | April 18, 2012
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.

Are Smartphones Changing What It Means to be Human?

Jessie Gruman | April 11, 2012
"Nagging is still nagging, whether it comes from your phone or your mom," says Jessie Gruman, a social psychologist who heads the Center for Advancing Health, a patient-advocacy group out of Washington, DC. in the recent Boston magazine article, Are Smartphones Changing What It Means to be Human?

What's Engagement Now? Expert Janet Heinrich Discusses Emerging Challenges

Janet Heinrich | April 4, 2012
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.

Why Can I Only Get Health Care from 9 to 5, M thru F?

Jessie Gruman | March 28, 2012
Last week, the waiting room of the out-patient cancer clinic looked like an airport lounge without the rolling suitcases. There were about 20 of us cancer survivor-types talking on our smartphones, fiddling with our iPads, reading The New York Times...What's wrong with this picture?

What's Engagement Now? Expert Maulik Joshi Discusses Emerging Challenges

Maulik Joshi | March 21, 2012
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.

What's Engagement Now? Expert Chris Gibbons Discusses Emerging Challenges

Chris Gibbons | March 14, 2012
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.

Will We 'Just Say No' to Screening Tests?

Jessie Gruman | March 7, 2012
Will we - you and me and our parents and neighbors - be a significant force in quelling the tide of over-testing for the early detection of disease?

The Unanticipated Price of Successful Cancer Treatment: Appropriate Health Care for Survivors

Jessie Gruman | February 22, 2012
The day I completed treatment for Hodgkin Disease in 1974, my oncologist shook my hand, wished me luck and said good-bye. 'But how will I know if the cancer comes back? I asked.

What's Engagement Now? Expert Douglas Kamerow Discusses Emerging Challenges

Douglas Kamerow | February 15, 2012
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.

'Patient Engagement!' Our Skin is in the Game

Jessie Gruman | February 8, 2012
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.

What's Engagement Now? Expert Carol Cronin Discusses Emerging Challenges

Carol Cronin | February 1, 2012
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.

What Are the Chances We Need to Understand Probability?

Jessie Gruman | January 25, 2012
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?

What's Engagement Now? Expert Gail Hunt Discusses Emerging Challenges

Gail Hunt | January 18, 2012
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.

Lessons from the Year of Living Sick-ishly

Jessie Gruman | January 11, 2012
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.

Book Review: Dissecting American Health Care: Commentaries on Health Policy and Politics

Jessie Gruman | December 21, 2011
My friend and former Chair of the CFAH Board of Trustees, Doug Kamerow, has written a book that I think you will like. His compilation of essays is wonderful if you have a mild interest in health policy and is important for public health students. It's also a fun read for those of us who spend our days working on the issues Doug highlights.

The Waiting is the Hardest Part

Jessie Gruman | December 14, 2011
That old Tom Petty song, 'The Waiting is the Hardest Part,' keeps running through my mind. Four of my friends are waiting to hear the results of medical tests taken last week.

When Will Grasp Catch Up with Reach? Older People Are Missing the Benefits of Remote Patient Monitoring for Chronic Illness

Jessie Gruman | December 7, 2011
Did you know that every nursing home resident in the US must be asked every quarter whether she wants to go home, regardless of her health or mental status? And if she says yes, there is a local agency that must spring into action to make that happen.

Don't Miss the Chance to Engage Us in Our Care When Introducing Patient-Centered Innovations

Jessie Gruman | November 30, 2011
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.

What's the Price on That MRI? Patients and the Price of Health Care

Jessie Gruman | November 23, 2011
A couple of weeks ago, I was asked to speak as a patient about 'consumers and cost information' while being videotaped for use in the annual meeting of the Aligning Forces for Quality initiative funded by the Robert Wood Johnson Foundation. Here's what I had to say.

Who Will Help Cancer Survivors Stay Healthy When Treatment is Over?

Jessie Gruman | November 16, 2011
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.

The Rocky Adolescence of Public Reporting on Health Care Quality: It's Not Useful Yet, and We're Not Ready

Jessie Gruman | November 9, 2011
The American people, long protected from the price of health care by insurance, are now forced to act as consumers. This situation is a free marketer's dream.

Patient Engagement: Expert Trudy Lieberman Talks About Challenges

Trudy Lieberman | November 7, 2011
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.

Getting the Patient's Perspective in Research: Will PCORI Deliver on its Promise?

Jessie Gruman | November 2, 2011
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."

Patient Engagement: Expert Carol Alter Talks about Challenges

Carol Alter | October 31, 2011
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.

Drop-kicked into a Foreign Country

Jessie Gruman | October 26, 2011
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.

Patient Engagement: Expert Judith Hibbard Talks about Challenges

Judith Hibbard | October 24, 2011
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.

"That's Not What I Wanted to Hear!": Evidence-Based Medicine and Our Hard Choices

Jessie Gruman | October 19, 2011
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.

Patient Engagement: Expert Shoshanna Sofaer Talks about Challenges

Shoshanna Sofaer | October 17, 2011
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.

Contagion: Action! Adventure! The Value of Science?

Jessie Gruman | October 12, 2011
Our country is politically polarized. The economy is teetering. Distrust of government and its employees is at an all-time high. Scientists are criticized as biased money-grubbers.

Patient Engagement: Expert Kate Lorig Talks about Challenges

Kate Lorig | October 11, 2011
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.

I am Not My iPhone

Jessie Gruman | October 5, 2011
There is excitement in the air about how mobile phones are the breakthrough technology for changing health behavior. Last Saturday, I was convinced this must be true. In two short hours, I...

Patient Engagement: Expert David Sobel Talks about Challenges

David Sobel | October 3, 2011
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.

The Formidable Complexity of Making (Some) Health Decisions: Book Review

Jessie Gruman | September 28, 2011
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.

Patient Engagement: Expert Molly Mettler Talks about Challenges

Molly Mettler | September 26, 2011
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.

Will Oz Connect Washington with the People in the Heartland on Health Care Quality?

Jessie Gruman | September 21, 2011
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.

Patient Engagement: Expert Connie Davis Talks about Challenges

Connie Davis | September 19, 2011
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.

Our Experience Trumps Policy in Changing Our Health Care Beliefs

Jessie Gruman | September 14, 2011
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.

Patient Engagement: Expert Dale Shaller Talks about Challenges

Dale Shaller | September 12, 2011
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.

Nine Out of 10 of Us Like Health-Related Numbers

Jessie Gruman | September 7, 2011
It is not just when we are seriously ill that numbers dominate our experience with health care. Advances in technology have made it possible to quantify and thus monitor a seemingly infinite number of physiological and psychological health-related states.

Middle-of-the-Night Medicine is Rarely Patient-Centred

Jessie Gruman | August 31, 2011
Here's is my recent interview for 'Middle-of-the-Night Medicine is Rarely Patient-Centred' by Erin Walkinshaw, a report in the Canadian Medical Association Journal (CMAJ) on the subpar level of health care provided in hospitals on weekends or evenings.

Ask Me if I Washed My Hands and Drank Gatorade in the Last Hour

Jessie Gruman | August 23, 2011
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.

Name Calling in Health Care

Jessie Gruman | August 17, 2011
Here is access to my interview-Name Calling in Health Care-hosted by Taunya English on NPR station WHYY.

Rhetoric Ahead of Reality: Doctor Ratings Not Useful Yet

Jessie Gruman | August 10, 2011
Given the current lack of useful objective information, we should be wary of imprecations for us to thoroughly check out any doctor before we consult him. For many of us, the idea that we can pre-judge the competence of a physician is presumptuous.

Bad Language: Words One Patient Won't Use (and Hopes You Won't Either)

Jessie Gruman | August 3, 2011
"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.

Our Preference in Health News: Uncertainty or Naked Ladies?

Jessie Gruman | July 27, 2011
News of the World wasn't read by 15 percent of the British public because it told people what they should know. It got there by giving them what they wanted: stories about the peccadilloes of the rich and famous, accounts of the gross incompetence of government and of course, pictures of naked ladies.

Patient Advocates: Flies In The Ointment Of Evidence-Based Care

Jessie Gruman | July 18, 2011
The women recounted how their lives had been saved as they pleaded for the Food and Drug Administration not to withdraw approval for Avastin as a treatment for advanced breast cancer. They did so even without evidence that it provides benefit and with evidence that it confers risks.

Engagement Does Not Mean Compliance

Jessie Gruman | July 13, 2011
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.

Shared Decision Making in the News

Jessie Gruman | June 29, 2011
Media coverage of the challenges we face in making good treatment decisions often focuses on and sensationalizes medical errors, catastrophes and risks. So it was great to see this impressive TV news clip circulated by Gary Schwitzer of HealthNewsReview.org in his blog last week.

Should Doctors Protect Us from Data about Medical Risks?

Jessie Gruman | June 22, 2011
Sara had a pain in her side that she attributed to using a new ab machine at the gym. But over the next couple days, the pain increased and made her short of breath. On the third day, she consulted her primary care doctor, who examined her and found nothing untoward. But he recommended that she go to the Emergency Department to get the pain checked out. At the ED, she had a blood test and a chest x-ray, which were both normal. 'Do you want a CT scan?' she was asked by an ED physician. She replied, 'Well I've already been here almost three hours. I might as well.'

Check-In-The-Box Medicine: Can the Blunt Instrument of Policy Shape Our Communication with Clinicians?

Jessie Gruman | June 15, 2011
I sat in a dingy pharmacy near the Seattle airport over the holidays, waiting for an emergency prescription. For over two hours I watched a slow-moving line of people sign a book, pay and receive their prescription(s). The cashier told each customer picking up more than one prescription or a child's prescription to wait on the side.

Appointment in Samarra*: Our Lives of Watchful Waiting

Jessie Gruman | June 8, 2011
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.

Why Angry Birds Gets More Play Than Health Apps

Jessie Gruman | June 1, 2011
I have been musing about why, despite our fascination with gadgets and timesaving devices, so few of us use the apps and tools that have been developed to help us take care of ourselves.

What Must We Know About What Our Doctors Know?

Jessie Gruman | May 25, 2011
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 ingénue 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.

No Magic Pill to Cure Poor Medication Adherence

Jessie Gruman | May 18, 2011
You are sick with something-or-other and your doctor writes you a prescription for a medication. She briefly tells you what it's for and how to take it. You go to the pharmacy, pick up the medication, go home and follow the instructions, right? I mean, how hard could it be? Pretty hard, it appears. Between 20 percent to 80 percent of us ' differing by disease and drug ' don't seem to be able to do it.

Patient-Centered Care: From Exam Room to Dinner Table

Jessie Gruman | May 11, 2011
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.

Patient Navigators: Are They Necessary or Just Nice?

Jessie Gruman | May 4, 2011
Each of the four times I have received a cancer-related diagnosis, I felt like I had been drop-kicked into a foreign country: I didn't know the language, I didn't understand the culture, I didn't have a map and I desperately wanted to find my way home.Over the years I have listened to hundreds of people describe the same experience following the diagnosis of a serious illness. As the number of physicians, diagnostic test sites and treatment options have grown and the lack of seamless, coordinated care persists, the majority of patients and their loved ones struggle to find the right care and make good use of it.

Pothole Forming Ahead: Aging and the Migration of Health Services and Information Online

Jessie Gruman | April 27, 2011
It was only a small hole in the pavement in front of my building last fall. But the seasonal snow, ice and salt, a dramatic increase in traffic and the neglect of a cash-strapped local bureaucracy has produced a honking big pothole that slows a lot of people down. We face a similar figurative pothole as vital health-related activities such as appointment scheduling, interaction with providers and comparative cost and quality information migrate to the Web.

Semper Paratus: Our Decisions About Emergency Care

Jessie Gruman | April 20, 2011
Nora misjudged the height of the stair outside the restaurant, stepped down too hard, jammed her knee and tore her meniscus. Not that we knew this at the time. All we knew then was that she was howling from the pain. There we were on a dark, empty, wet street in lower Manhattan, not a cab in sight, with a wailing, immobile woman. What to do? Call 911? Find a cab to take her home and contact her primary care doctor for advice? Take her home, put ice on her knee, feed her Advil and call her doctor in the morning?

The Lemon of Illness and the Demand for Lemonade

Jessie Gruman | April 13, 2011
"Life gives you lemons and you make lemonade your response to all those cancer diagnoses is so positive, such a contribution!" "Your work demonstrates that illness is a great teacher." "Your illness has been a blessing in disguise." Well-meaning, thoughtful people have said things like this to me since I started writing about the experience of being seriously ill and describing what I had to do to make my health care work for me. I generally hear in such comments polite appreciation of my efforts, which is nice because I know that people often struggle to know just what to say when confronted by others' hardships.

Are We All Ready for Do-It-Yourself Health Care?

Jessie Gruman | April 6, 2011
The outsourcing of work by businesses to the cheapest available workers has received a lot of attention in recent years. It has largely escaped notice, however, that the new labor force isn't necessarily located in Southeast Asia, but is often found here at home and is virtually free. It is us, using our laptops and smart phones to perform more and more functions once carried out by knowledgeable salespeople and service reps.

Does My Doctor Trust Me (and Does It Matter)?

Jessie Gruman | March 30, 2011
Members of the American public are frequently surveyed about their trust in various professionals. Doctors and nurses usually wind up near the top of the list, especially when compared to lawyers, hairdressers and politicians. Trust in professionals is important to us: they possess expertise we lack but need, to solve problems ranging from the serious (illness) to the relatively trivial (appearance).

The "True Grit"-tiness of Sharing Health Care Decisions with Our Doctors

Jessie Gruman | March 23, 2011
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.

Poster Child for Survivorship Planning

Jessie Gruman | March 16, 2011
I am a poster child for why everyone who has had cancer needs to work with their doctor(s) to develop and implement a survivorship plan.

It's Time to Tango: Impatient With Progress on Patient-Physician Partnerships

Jessie Gruman | March 2, 2011
The other day I came across this photo of a couple clasping each other in a dramatic tango on the cover of an old medical journal'a special issue from 1999 that was focused entirely on doctor-patient partnerships. The tone and subjects of the articles, letters and editorials were identical to those written today on the topic: 'it's time for the paternalism of the relationship between doctors and patients to be transformed into a partnership;' 'there are benefits to this change and dangers to maintaining the status quo;' 'some doctors and patients resist the change and some embrace it: why?'

A Valentine to Shared Decision Making

Jessie Gruman | February 14, 2011
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.

One Small Step for Patient-Centered Care, One Less Barrier to Engagement

Jessie Gruman | February 1, 2011
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'

Getting Through the Shock of a Devastating Diagnosis

Jessie Gruman | January 25, 2011
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.

Dicker With Your Doc? Not So Fast'

Jessie Gruman | January 20, 2011
'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.

More Can Also Be Less: We Need a More Complete Public Discussion about Comparative Effectiveness

Jessie Gruman | December 1, 2010
Media coverage of the government's new investment in comparative effectiveness research leans heavily toward the effects of such research on new drugs and technologies: Will such evaluations lead to restricted access to the latest innovations? Will insurance no longer cover a drug that might give my aunt another year to live? Will such research hinder the development of a drug that could cure my nephew of type 1 diabetes?

GoodBehavior!: Evidence That Engagement Does Make a Difference

Jessie Gruman | November 15, 2010
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.

Friends, Fatigue and the Slow Slog Back

Jessie Gruman | November 5, 2010
I have much experience with serious illness. And so I am a connoisseur of fatigue: the sleepless edginess of post-radiation fatigue; the heavy constancy of cardiac fatigue; the blur and blues of chemotherapy-related fatigue.

Sharing the Burden

Richard Sloan | November 4, 2010
Jessie has written about her perspective as the patient in an extremely stressful situation. I can add a different one: that of the husband of my seriously ill wife.

Hospital Discharge Without a Net

Jessie Gruman | November 3, 2010
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.

Patient Engagement on the Med-Surg Floor

Jessie Gruman | November 2, 2010
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.

Contemplating Safety While Lying Down

Jessie Gruman | November 1, 2010
You have to get out of this hospital it's a dangerous place, each of my physician friends exclaimed when they came to visit me during my recent stay after surgery for stomach cancer.

When Someone Close Has Cancer...

Jessie Gruman | September 28, 2010
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

Jessie Gruman | September 27, 2010
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?

Jessie Gruman | September 16, 2010
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

Jessie Gruman | September 1, 2010
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

Jessie Gruman | August 24, 2010
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

Jessie Gruman | August 19, 2010
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.

From the Department of "Gosh! Why Didn't I Think of That?"

Jessie Gruman | August 18, 2010
For every problem there is a solution which is simple, clean and wrong.- Henry Louis Mencken

Patient-Centered Care Should Minimize Post-Surgical Surprises

Jessie Gruman | August 17, 2010
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.

You Want Me to Discover WHAT on My Personal Health Record?

Jessie Gruman | August 3, 2010
The Robert Wood Johnson-funded Project HealthDesign primer on Personal Health Records (PHRs) describes the new PHR both as a repository for information related to one's health care and a way to record observations about daily living (ODLs). We're meant to track these observations the amount and quality of our sleep; what we ate; our blood pressure; our symptoms in the belief that such information will shape daily decisions and allow for a more productive discussion with (our) clinician.

Who's Got My Back?

Jessie Gruman | July 27, 2010
Last week The New York Times published a front-page feature about how diagnosing breast cancer can be surprisingly difficult, prone to both outright error and case-by-case disagreement over whether a cluster of cells is benign or malignant.

Will I Do it for My DNA? Can Personalized Medicine Spark Healthier Behavior?

Jessie Gruman | July 15, 2010
The 10th Anniversary of the decoding of the human genome has prompted a whole new round of media coverage on progress toward 'personalized medicine i.e., approaches that use genetic information to prevent or treat disease in adults or their children. Not only will drugs be carefully tailored to our individual genetic profile, we will also be able to reduce risks and enhance our health by taking specific lifestyle-related actions that are determined by our unique constellation of DNA.

Lead Us Not into Expectations

Jessie Gruman | July 6, 2010
Have you noticed that when health experts discuss the high cost of care, they often assert that our demands for more and more advanced -- care are driving the upward trajectory of its cost?

How Can We Pay Less for our Health Care?

Jessie Gruman | June 25, 2010
I just completed a series of radio and TV interviews about the extent to which people participate in their health care you know, those three-questions-in-90 seconds blips that currently constitute news for the viewing/listening public.

The Inconvenient Evidence on Alzheimer's

Jessie Gruman | June 16, 2010
Lifestyle May Not Prevent Alzheimer's trumpets a headline in Time magazine. The article goes on to describe a carefully conducted review of decades of evidence examining the hypothesis that exercise, social relationships, diet or vitamins can ward off Alzheimer's disease. The study concludes that there is not sufficient evidence to be able to recommend that the public take any of these actions to prevent or delay the disease.

Watching the UK Careen Toward National Online Medical Records

Jessie Gruman | June 9, 2010
The National Health Service in the UK has rolled out its campaign to inform the public that an individual's online summary care record will soon be readily available to any health care worker. At that point, people will be able to view their summary, schedule hospital appointments and make use of health information and links to help them manage their health and lifestyle by keeping track of information like your weight, blood pressure, cholesterol levels and medications.

Do Health Threats Migrate?

Jessie Gruman | June 7, 2010
Have you ever gotten one of those phone calls from your doctor the starts out I'm very concerned about what we saw in your mammogram/colonoscopy/echocardiogram?

Getting to the Right Doctor at the Right Time

Jessie Gruman | June 3, 2010
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.

The Perils of Consenting Adults

Jessie Gruman | June 1, 2010
Most of us like it when our health care decisions are simple and straightforward -- when the potential benefit of one option far outweighs the benefits and risks of the other. Should I smoke? No. Should I get a mammogram? Yes. However, advances in screening, preventive measures, diagnostic technologies and treatments have rendered our preference for the certainty of the simple choice obsolete.

Participate in My Care? Room for Improvement

Jessie Gruman | May 20, 2010
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.

Our Shopping Problem

Jessie Gruman | May 17, 2010
Apparently, borrowers who obtained a home loan in the last five years spent five hours researching a mortgage, half the amount of time they spent researching a car and the same amount of time they spent researching a vacation, according to a study reported in The New York Times on Saturday.

Risky Treatment Decisions: The Devil and the Deep Blue Sea

Jessie Gruman | April 22, 2010
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

Jessie Gruman | April 20, 2010
2009 was not a good year for the public's understanding of evidence.

What is a Symptom, Anyway?

Jessie Gruman | April 14, 2010
I recently asked my dad if he ever reads the health section of the newspaper. He said "Nope, never. That's for people who are sick."

The Squeeze of Mail-Order Drugs for People with Chronic Illness

Jessie Gruman | April 12, 2010
Do you have your prescriptions filled through a mail-order pharmacy? You are not alone.

The Water Is Wide: Teens with Chronic Conditions Take on Their Own Care

Jessie Gruman | April 8, 2010
I was recently trading stories about the treatment of our childhood cancers with a young friend who mentioned that until recently (he's 26), he continued to be followed by his pediatrician why switch? His doctor knew him, after all.

Emergency Back-up Plan for Slow EHR Implementation: Us

Jessie Gruman | April 5, 2010
We can be excused for thinking that our doctors have a computer program that allows them to track our health history and forward relevant record to a specialist to whom they are referring us. After all, when I walk in to my provider's office, the receptionist is sitting in front of a computer; plus my doctor makes use of other computerized devices for measuring my temperature, blood pressure, weight and heart rhythms.

Surprised I was So Unprepared

Jessie Gruman | April 2, 2010
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.

Welcome to the "What it Takes'' Blog!

Jessie Gruman | April 1, 2010
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.