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Sometimes Patients Simply Need Other Patients

Other people’s stories can nudge us into treatment. In response to Austin’s blogging about sleep apnea, several of his colleagues admitted to having or suspecting they had the condition, but not treating it. They said his blogging is encouragement to change that.

Those sharing their stories can also benefit. “It’s very gratifying to help others manage these issues; I know how helpful it can be,” Ms. Peters said. “I didn’t have a mentor to help me through my breast cancer treatment. I was very isolated, sitting home alone by myself. It was very depressing.”

Likewise, when Aaron described his frustrations with the health care system in refilling his medications every three months, it was cathartic, and readers with the same troubles said they felt heard. When Austin wrote about sleep apnea, he received responses with helpful information that changed his mind about which of two reasonable therapies to try first.

It even helps when it’s part of research. When Aaron has conducted focus groups of patients and parents with chronic conditions, like diabetes, many participants reported that the biggest benefit to them was participating, sharing their stories and making connections with others going through the same issues.

Unfortunately, peer-to-peer health care has potential downsides. Peer advice shouldn’t be confused with using the internet for diagnosis, a practice that studies have shown is not very accurate. But online forums for specific conditions are another matter. One study found that only a few out of nearly 5,000 posts on an online breast cancer forum were false.

Peer sharing isn’t always helpful because people can respond differently to treatment. What worked for us may not for you and vice versa. Additionally, in some cases peer sharing can skew perspectives in dangerous ways. Misinformation wrapped up in a personal health care story can have a huge negative impact for all of us. For example, stories about how vaccines are associated with harm, though potentially true in rare instances, do not imply that vaccines cause more harm than good. In fact, vaccines cause much, much more good than harm.

“If it’s high stakes, if you need an accurate diagnosis for a serious condition, you should see a professional,” Ms. Fox said. “But for emotional support or a quick remedy for a minor issue, peers can be extremely helpful.”

Article source: https://www.nytimes.com/2018/07/09/upshot/sometimes-patients-simply-need-other-patients.html

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