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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