This video resource was created by Susannah Fox and Reframe Health. Learn more about Susannah’s work here.
Peer Support: A Shared Definition
/pir sə-ˈpȯrt / noun
Peer Support is the support that people who share the lived experience of a health condition or health risk give to one another. It can also address issues beyond health. Online support group members choose memberships based on need for support based on a disease or health risk and their status as a patient, caregiver.
Peer Support By the Numbers
51
51% of young adults say they have tried to find people online with health concerns similar to their own.
Source: Hopelab 2018 Survey
220,000,000
220 million people participate in 'meaningful' Facebook groups in 2019. It is likely that many, if not most, involve peer support, although it is impossible say how many are focused on health. Hundreds of thousands of people participate in other online health group platforms.
79
79% of participants in our survey of 281 members of online cancer support groups said exchanging information was one of their primary reasons for participating.
Source: TLC 2019 Survey
The Good + Bad of Online Peer Support
THE GOOD
Information
People can exchange information on treatments, outcomes, side effects, emotions, and other aspects of their health experiences with people across the globe who have the same challenges.
Access
No matter where people live, whether they are sick or well, live in urban or rural areas, or what their work schedules are, if they have access to the internet, they can connect to others and share life-saving information and support at any time.
THE BAD
Privacy Violations
Most peer support happens on for-profit social media platforms focused on monetizing user data. Privacy can be violated both when the platform uses or sells data and when third parties illegally access the data.
Misinformation
Social media, including online groups, can allow for the spread of misinformation that has negative impacts on health, in the absence of good moderation and oversight.
“What is one word to describe your health support group?”
During our summit of peer support groups in DC, we went around the room to ask everyone to describe their group. These were the answers we got.
For Healthcare Providers + Researchers
Peer Support as a Critical Part of the Healthcare Continuum
Tens of millions of people seek information and support in online support groups every day. It’s important that healthcare providers and institutions recognize this phenomenon, understand the reasons behind it, and find meaningful ways to partner with, add value to, and sustain these groups and the critical services they provide to patient communities.
We have created a resource for healthcare professionals and researchers interested in better understanding what online peer support is all about and why it should matter to everyone interested in improving human health and well-being.