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Finding Online Health Peers

Survey finds 39 percent of young people look for “someone like me” when researching health issues.

young woman texting in a cafe

It’s no surprise that young people search online for health information, but a recent survey found many are looking for something more personal than a medical definition or a list of common symptoms.

Thirty-nine percent of young people, age 14 to 22, say they’ve searched for an online health peer –who shares their medical condition or concerns, according to a national survey conducted by Hopelab and Well Being Trust. Even more of the young people surveyed – 61 percent of them – said they used the internet to read about or watch someone share a health experience. Meanwhile, 80 percent of young people said they had never communicated online with a doctor or nurse.

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To Susannah Fox, one of two researchers who authored the study, the results hint at the way the health information ecosystem is evolving. Patients now have more of a voice alongside traditional sources, such as doctors and hospitals. And it’s pretty simple for people to connect online, whether it’s following someone’s Instagram account, watching a YouTube video or commenting in an online discussion.

“The new tipping point is peer-to-peer,” said Fox, who co-authored the study with Victoria Rideout, an expert on children and media whose experience includes a decade with the Kaiser Family Foundation.

Not only are young people connecting online, but nearly all – 94 percent – said the experience was helpful. Young people are finding each other most often through social media, blogs and online forums, according to the survey.

They’re finding fellow patients like Victoria Graham, a recent contestant in the Miss Maryland pageant who’s a highly visible advocate for those with the rare disease Ehlers-Danlos Syndrome. She has more than 9,000 followers on Instagram and shares both her glamorous moments and more difficult times. Graham recently posted photos of herself on a stretcher headed for another spinal surgery.

Many young people who have primary immunodeficiency (PI) diseases connect through the Immune Deficiency Foundation’s online community IDF Friends and its diagnosis-specific Facebook groups, said Kara Moran, the IDF’s Associate Vice President of Communications. Sometimes those digital connections become friendships in real life.

“For a rare disease like PI, finding health peers online is important. But that in-person meeting of someone else who is like you and just gets it can be life-changing,” Moran said.

People with complex illnesses, such as cancer and other rare diseases, have been leading the peer-to-peer trend for years, Fox said. She surveyed adults about their online health searches seven years ago when she was with the Pew Research Center. Back then, only 20 percent of adults were in search of online health peers, but the researchers found something interesting when they gathered anecdotal information from people who have rare diseases. The research, done in collaboration with the National Organization for Rare Disorders (NORD), showed that as far back as 2011 these patients were already making online connections.

The young people in the 2018 survey represented the general population, not a rare disease audience, a sign that the peer-to-peer trend is going mainstream, Fox said.

Asked about the potential flaws in patient-to-patient advice, Fox said patients tend to use common sense. Some of the young people surveyed said they took what they learned online and talked it over with a parent, usually Mom. Other research has shown patients generally rely on health care providers when it comes to medical matters like choosing a doctor and deciding on a course of treatment.

“But when they want to know how to get through the day,” Fox said. “It’s a fellow patient.”