A voice is missing from discussions of the patient experiences

The demand for patient voices is on the rise as hospitals and dialysis centers, research teams and health care advisory groups face requirements to document our participation in governance and program decisions. And many of us have stepped forward to take on these roles.

Some of us do so as victims of horrific medical errors or uncoordinated care resulting in injury or from disrespectful care that undermines all confidence in health professionals and institutions. We want to make sure what happened to us or our child never happens to anyone else.

Some of us are heroes, defiantly wearing Jimmy Choo 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.

And some of us are champions employed by (or volunteering for) patient groups or disease organizations that provide patient information, raise money and advocate for policies to ensure that people with this disease or that condition have access to all needed medicines and services and that public research dollars are allocated to develop cures for it. We represent the unique access and insurance coverage needs of subgroups of patients.

These are the dominant voices that are defining the patient experience of health care in the U.S. today – and what specifically is needed to improve that experience in a particular institution or through specific research. But is a portrait based solely on these types of experiences representative?

Most of us like our doctors and nurses and think they are helping us, not hurting us or giving us short shrift. Sure, it would be better if health insurance was cheaper, if we didn’t have to sit so long in the waiting room or that hospital nights were quieter, but we adjust and move on. Because we have not been assaulted by inadequate care in the face of life-threatening events, like those who speak for victims and heroes, we shake off missteps and puzzling encounters, eager to resume our normal lives.

Yet the efforts of most of us to find good health care and make the most of it are thwarted by pervasive shortcomings in how care is delivered: low investment in shared decision making by our doctors; lack of information about where to get after-hours care; poor prescribing practices by our clinicians; incomprehensible insurance policies; lack of access to follow-up questions after an appointment; inadequate cost and quality information about treatments … the list goes on. Not one of these deficits is catastrophic. But each of them undermines our ability to make the best possible use of our health care for ourselves and those we love.

Who among us experiences enough of these thoughtless inefficiencies to think, “This is absurd! No one should have to put up with this!” And who among us who do venture to think this are inspired to say “I’m going to volunteer for the hospital board to try to fix this!” or “I’m going to volunteer for a federal advisory group on the quality of care to make sure they attend to these concerns!”

Not many of us, I fear. And so common assumptions regarding patient experience of care too often consists of ungeneralizeable one-off anecdotes (which are too easy for professionals to dismiss) and special interest policy statements (which are no less dismissible as special interests).

This is not good enough.

We are at long last invited to have a seat at the tables of health care governance and scientific research. More of us need to be there, representing our experiences and the experiences of others – not just the outlying (i.e., shocking, heartwarming) experiences – but those of normal people’s everyday efforts to make use of health care to keep us and our families healthy, to return us to health when we are injured or ill and to help us maintain our functioning and equilibrium when our health is declining.

Do you believe this voice is missing from discussions of the patient experiences? Do you have any ideas about what it will take to make sure that it, too, is considered in improving research and health care practice?

Jessie Gruman is the founder and president, Center for Advancing Health. She is the author of Aftershock: What to Do When You or Someone you Love is Diagnosed with a Devastating Diagnosis. She blogs regularly on the Prepared Patient blog.

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  • karen3

    I don’t think they are truly interested in “real” patients. PCORI has a format that that is decidedly unfriendly and rigid for someone coping with a serious medical problem. Multiple days of meetings, tight schedules, etc. A number of patients I know applied and nobody made the first cut, including me, with 15 years of federal acquisition experience. If you are talking about a hospital board, they are looking for sycophants and business leaders, not patients who have had issues. I very much doubt that someone with disabling condition could be accommodated.

    Second, PCORI has the gall to put health care professionals in as “patient representatives” speaking for the patient voice. This is typical where somehow folks think that social work or nursing is a patient perspective. It is not. If you actually look at the bios, virtually every “patient voice” is really some professional who is making a living in the health care system. I know that it is not for lack of non-professional “patient advocates” applying. There was a significant amount of advertising of the panels on patient boards and alot of people said they were applying. I see no one who looks like they live with a chronic disability on that board.

    So while I appreciate that you would like to see real patients in the mix, it does not serve the agendas of the professional health care community and they are unwelcome.

  • karen3

    For example, look at this “patient” voice:

    Stephen Arcona, MA, PhD—East Hanover, NJ Executive Director, Outcomes Research Methods & Analytics, Department of Health Economics and Outcomes Research

    Novartis Pharmaceuticals Corporation Representing: Patients, Caregivers, and Patient Advocates

    that’s right — they have Novartis as a “Patient.”

  • meyati

    This is so sad. My oncology radiology clinic has a big sign at the front door, with the name of the director, and whom to contact there, within the MD Anderson headquarters and the state. The oncology unit is the complete opposite. The whole non-cancer part of the hospital doesn’t have contact with the public. You don’t know who is in charge of what, and they have a patient representative that loosely interprets things anyway they want.

    How easy is it to have a medical mistake? I went to the ER, and wasn’t given an antibiotic in large enough of a dose for a cancer-radiation patient. Within 48 hours I was in the main hospital getting IV antibiotics. Now my doctor recommended that I get a new script for antibiotics before I left the hospital-that was on my paperwork when I was admitted. It wasn’t a prescription. When I was discharged I realized that I’d run out on Sat AM. I kept asking for a script. I told them that I had only so many pills at home. I was told that my electronic chart said that I had a new script, that i was old and sick and the pills were home, so I couldn’t know how many pills I had-and the best reason for not writing me a script-I was high on codeine sulfate and morphine. The hospital finally gave me a script and it said -Augumentin on it. We took it to the pharmacy that said it wasn’t a script, but for to take what I had, but they sold us a $45 bottle of probiotics, was also on the script paper. When I got home, I called the primary clinic and the nurse that answers the phone told me to call back when I ran out of meds.

    My arm didn’t get infected, but the healing process stopped, and my wound was like a pork chop in a butcher shop.Just sitting there. Mon I called and ranted. My doctor’s private nurse was waiting for me in the large clinic. I had my med bottle and all of the paperwork. I got a shot in the rear, and a script for horse pills. They agreed that nobody gave me a new script– I was originally sent to the hospital post haste from primary care-and the message got garbled.

    This is how easy things to go south.

  • pnathanson

    I’m a management consultant specializing in healthcare. Something I haven’t heard yet in the discussion: too-busy physicians and their offices inevitably cut corners,. Not on purpose, of course. But something’s gotta give as the demographics, the system and the economics demand more “production.”
    Here is a personal example. For over a year I suffered frequent episodes of slurred speech, impaired coordination, glassy eyes, and no memory of what had happened. During that period I had one full-blown inpatient stroke workup ($26K), my wife called 911 three times, I saw my primary care physician, one other internist (both Board Certified), three neurologists, a psychiatrist, and five Emergency Medicine docs. I had every kind of test you can think of, includiing a complete neuropsychological workup. I saw a counselor for depression. Nobody could figure it what was wrong.
    Finally, in despair, one of the neurologists referred me to a cardiologist. I described my symptoms to him. He said, “I’m just a cardiologist, but that sounds like a classic reaction to Ambien.” And that it was. Stopped taking it, no more symptoms. Not only had my primary care physician prescribed Ambien for me and should have recognized the symptoms, but every one of those offices and the ED registration process had asked for my medications. I gave them all a printed list in alphabetical order. Ambien was first on the list.
    This cannot be dismissed asan anecdote. One busy physician not looking at the meds list, and not stopping to think about my symptoms before ordering more tests? Sure, could happen. Two? Well,, okay..Three, hmmm. Eleven? Do you think there’s something systemically wrong here?

    • Maura69

      I personally have a Vascular Surgeon that I contact whenever there is something physically wrong that my other doctors are either unable to find or choose to ignore. We have been personal friends for 40 years and he has helped me out of some tight places. This is great for me but should not be the norm. I am glad that Ambien was the culprit and nothing more serious.

  • Trisha Torrey

    Jessie – as always, you make your points – direct, easy to understand and eloquent. Thank you.

    Because our presence is mandated in some areas, “real” patients (and I don’t mean patient “representatives” – what a crock that is!) are, on occasion, being asked to participate in discussions, whether it’s through conferences, or in the boardroom…

    I have been asked a handful of times to be that representative patient. And I’m thrilled! UNTIL I am told that the associated costs (ranging from plane fare to hotel rooms and more) are all supposed to come from my own pocket. Of course, that means I have to say no. I don’t have those kinds of funds.

    But of course, then the organization that invited me can claim that they “tried” to find a patient representative, but no one would come to their table. Never mind that no one else at that meeting is paying their own way. They have corporate budgets or travel expense budgets to draw from.

    There are dozens, perhaps hundreds of us patients who are knowledgeable, capable, and ready to help out to represent the patient point of view in all health arenas. But we need to be treated like the professionals we are, too.

    We patients are THE biggest stakeholders in any discussion of healthcare – yet we have no realistic way of participating in conversations until we are funded to do so – just like everyone else at the table.

    If you hear of an organization that “tried” to find a real patient to participate, but couldn’t, then remember this post. As patients, I think they want us to believe that the mere invitation is enough compensation. But as long as they don’t really want us (meaning, they are simply trying to meet the letter of the law), they will make sure there are barriers to participation.

    It’s truly a shame. But clearly, not much will change until patients with knowledge and capabilities, and the ability to truly move these conversations forward are funded to participate, too.

    Trisha Torrey

    Every Patient’s Advocate

  • Bart Windrum

    I’m sorry to be the sour grape but “uncoordinated care” and “disrespectful care” are *not* care at all. The functional term is “treatment”, and until we patient advocates start redefining what it is that’s delivered and begin using that terminology amongst ourselves and in our writings, we help perpetuate the myths underlying the harm we and our loved ones have suffered. That medicine developed a term for the scene (“discontinuity”—experienced by we patient-families as shock and harm) attests to its prevalence. So my first idea remains, as I stated in 2005–08 as I pondered our failures and wrote Notes from the Waiting Room, is that language is a root cause of our problems. It’s ours to change.

  • http://www.HealthcarePioneers.com/ Simon Sikorski MD

    ePatients are already present at most conferences and meetups. At Healthcare Pioneers meetings we have ePatients join discussions about healthcare innovations, user experience, etc. which proves to be extremely valuable for new technology companies. I foresee ePatients being more empowered as more companies and healthcare organizations start seeing the benefits of getting them involved early on!

    For me, it is ALWAYS about Participatory Medicine. Without the patients, it’s an incomplete picture.

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