Why Patient Voices Are Important

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Editor’s Note: Be sure to check out the collection of articles in the March issue and our new blog content for more on the patient voice in medicine.

I used to live on a short dirt road where everyone knew everyone else. We recognized each others’ children and would often share childcare responsibilities. A part of our extended neighborhood family for me included occasional medical consultations. I would hear about a neighbor’s call to his doctor to be seen for a cough and fever and the appointment that could not be scheduled for a week. I would bring my stethoscope over to the neighbor’s house to see if he really could wait for a week. And when it became clear that the fever and cough were most likely from pneumonia, I would either order antibiotics or send the neighbor to an urgent care center or emergency department. I would hear about good, bad, and strange encounters with the medical system–odd advice over the telephone, long appointment delays, doctors who did not communicate with each other. Over time it seemed that every one of my neighbors had encountered the medical system in one way or another. One had a fall from a roof, another a basketball injury, a third had a case of hepatitis, a fourth cardiac arrest requiring CPR. Then there were the less serious but more chronic problems–back pain, headaches, allergic rhinitis, rashes, and mental illness. While my physician skills were valuable in helping my neighbors sort out information that was often confusing, my understanding of how to navigate the health care system was probably more important–which doctor to call for what problem, how to explain a problem over the phone, which hospital was best for head injuries, which doctor not to see for a particular problem. While I did not realize it at the time, I was hearing the patient voices that I never heard at the hospital where I worked. Somehow the hospital blunted the nuanced sounds of the patient voices and, by the time I heard them, they fit neatly into my preconceived notions of what a patient history should sound like. I based what I taught in my medical school courses on the stories I heard in the hospital rooms and corridors. It was only later upon reflection that I realized how much I had been missing, how much more patients could have told me. I think the same can be true of our medical education journals and what we publish.

In our March issue, we provide two patient perspectives. One is by Jeannine English, president of AARP, and the second is by Bev Johnson, president and CEO of the Institute for Patient- and Family-Centered Care. I also interviewed Donna Cryer, a woman who had a liver transplant and who is president and CEO of the Global Liver Institute, and a blog post from Martina Rosenberg, a biochemistry faculty member who was recently a patient. I felt that it was important that we hear directly from patients because their experience often contradicts what we believe is happening in our academic health centers. While we teach about core competencies, such as communications skills and professionalism, our patients, particularly those with multiple chronic diseases, often experience a health care system in which specialists do not talk to each other and no one seems to be in charge. This leaves patients who are already burdened with serious illness to make sure that their doctors understand the possible side effects of the treatments they are advocating and communicate with each other to plan a course of action.

The voices of our patients contain a mix of gratitude, concern, and advice for improvement, and we must listen to them. We all went into medicine to help people, and perhaps we assumed that we knew what that meant. But our patients want to participate in the decisions that will affect them, and they want to help us help them. The only way we can do that is if we are open to hearing their voices and learning from their stories. I hope these patient stories will enrich our understanding of the goals of medical education, and I look forward to reading your patient stories in the comments below.

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