Sometimes Patients Need Other Patients

The following, coauthored by Aaron and Austin, originally appeared on The Upshot (copyright 2018, The New York Times Company).

When Jodie Ofosuhene learned she had breast cancer at age 29 in 2016, she got more than standard medical care. She was connected with Noel Peters, a former patient who serves as a mentor to new ones. “Noel helped me tremendously,” Ms. Ofosuhene said in an interview. “Every time I had a question about my response to treatment — whether it was normal — she had answers from her own experience.”

In an ideal world, when we are faced with a new health problem, a clinician is available to sit down and address all our questions and anxieties about the condition and its treatment. This ideal is rarely met in the United States health system. More typically, we’re rushed through doctor visits that fly by too quickly for us to gather our thoughts.

Other patients can help. They have (or have had) your condition, as well as your anxieties and questions, and they’ve found a path through. Their journeys can be informative and helpful, and can also help you prepare for the next session with a doctor.

“There’s a lot about the patient experience that doctors and nurses cannot convey because they haven’t gone through it,” Ms. Peters said. “You can get a much better sense of what it means to be a patient from another patient.”

We know this from experience. Both of us have health conditions that were once new to us. Aaron wrote about his ulcerative colitis and mental health. Austin has written about his insomniaminor heart condition and sleep apnea. At first, we sought lots of advice, and not just from doctors. In turn, once we gained experience, we shared what worked and didn’t.

Sharing health stories and learning from one another in an unpaid way (like in-person mentorship, online chats or phone calls) is known as peer health advice or peer-to-peer health care.

“After that diagnosis, you get home and you’re alone,” said Susannah Fox, an advocate and scholar of peer-to-peer health care and a former chief technology officer of the U.S. Department of Health and Human Services. “But you don’t have to be alone.”

The internet has made finding other people with your health problem easier. For example, the Database of Patients’ Experiences is an international collection of videos of patients sharing their experiencesabout various health conditions. This kind of sharing is similar to something humans have always done. When we have problems, we discuss them with others. We routinely get advice about where to get our car fixed and which plumber to call, for example.

One in four people receive information or counsel from someone with a similar condition. Few of us can read everything about our condition. Those who have gone before us can help sift through the mountain of information for what’s most useful. Studies of diabetes management found that those who participated in peer-to-peer health care lowered their blood sugar level more than those who didn’t. Studies of the effect of peer-to-peer health care in a variety of other areas, many of them randomized controlled trials, show the same.

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