Imagine an intervention that produces results like these:
- One-third of those living with chronic conditions are now more likely to take necessary medications.
- The risk of admission to a neonatal ICU during first year of life reduced by 63%.
- People with with poorly-controlled diabetes were able to achieve a 1.1-point reduction in their HbA1c.
Each one of these great outcomes came as a result of a behavior change intervention: Connection to peers. Communities of people who share the same condition came together to learn, share, and improve the way they care for themselves and others.
I’m giving a talk this week at the annual meeting of the Society of Behavioral Medicine that will focus on health and technology megatrends. I plan to start with what I see as the most important one: The internet gives us access not only to information, but also to each other.
Indeed, so much of what ails us is not only based in our biology, but also in our communities. Obesity, heart disease, diabetes, and diseases of despair like addiction and depression are not going to be solved in isolation. We know what we need to do: stop smoking (or don’t start). Maintain a healthy weight. Get a good night’s sleep. Exercise regularly – and try to work up a sweat when you do. But it’s much harder to navigate behavior change alone.
Let’s build the evidence base for peer to peer health care. This is not about one company, organization, or moment in time. It’s a movement that has been building for years. Check out my collection of studies and stories. If you know of additional examples, please share in the comments below or on Twitter with the hashtag #PeerHealthAdvice.
Update: I uploaded my slides to Slideshare.
Featured image: Scales, by Rob Brewer on Flickr.
I have literally hundreds of stories and witnessed thousands of people benefit from #PeerHealthAdvice through social networks. I’ll share two poignant examples of how the connectivity not only helped people directly in the network, but had a awe inspiring ripple effect.
Susy: a connector in life and death
I first introduced Susy (aka Carolyn) in this blog “I want my sex life back! TMI? Or gold for online communities and their managers?” https://cyhealthcommunications.wordpress.com/2014/07/30/i-want-my-sex-life-back-tmi-or-gold-for-online-communities-and-their-managers/
Diagnosed with breast cancer Carolyn wanted to talk about the stuff she couldn’t talk about with medical professionals. With her mixture of speaking frankly and exposing vulnerabilities, she quickly became a significant node of the network and a community leader that helped others talk, learn, teach and support. When Carolyn’s cancer metastasized she migrated to a community dedicated to living to the end on VirtualHospice. Again, she circled the wagons of support, drawing on the network to share about leaving a legacy, talking to her kids, and supporting her family and friends. Knowing how important her online community was to her, Carolyn’s childhood friends, M. and S., joined the community to read the messages to her. (https://bit.ly/2NKS3gM)
M passed this along to the community members “Your messages have brought many tears but also much strength to me and my soul. My thanks to you, Carolyn’s virtual angels, who have supported Carolyn and in turn support me, and Carolyn’s family who have been reading through the messages.”
The story doesn’t stop there. Many of Carolyn’s friends and family were struggling with the cruelty of cancer and the premature death of a friend. They didn’t have the words. The familiar phrases of “Get well soon.” “You can beat this.” were the ones they wanted to say, but knew didn’t apply any more. What were the right words? Again, M stepped in to bridge the virtual and online circles of support. She asked permission to publish the community’s messages on Carolyn’s CaringBridge page. Her family and friends now had help to find words and accept the grace of silence. They also had an additional network of supporters to accompany them through their loss and grief.
2. Transplant recipients share lifehacks: create patient education for patients by patients
Rosemary simply asked fellow transplant recipients “to share ideas about how you ‘live’ after your transplant. …Practical living; not the medical things.” That the messages flooded in isn’t surprising. That’s what happens in active online communities. Ideas were shared, adopted, adapted, improved, exchanged. It’s what happened next that created the ripple effect, helping beyond the community.
What started out as a conversation of thousands of words in the Transplant Group on Mayo Clinic Connect was transformed by a staff writer into a concise, practical list of tips. Tips by recipients for recipients (and their supporters).
> Top Transplant Hacks: Patients Share Their Best Tips and Tricks https://connect.mayoclinic.org/page/transplant/newsfeed/top-transplant-hacks-patients-share-their-best-tips-and-tricks/
But the community’s wisdom and reach didn’t stop there. Producers who create content for the Mayo Clinic app made this short video to share on the app and social media channels. https://www.youtube.com/watch?v=0ev221U7jaU
Colleen, I am honored by this comment – thank you! You probably picked up immediately on what I hope to spark: another “flip the panel” opportunity, just like the one we orchestrated for Stanford Medicine X in 2014. The public conversation about peer health advice started long ago and I’m inviting everyone, including the Society of Behavioral Medicine to add to it, before, during, and after my talk.
Again, thank you for adding these fabulous examples.
I have another great story that just happened today. A member of Mayo Clinic Connect posted this article from New York Times
> How to Quit Antidepressants: Very Slowly, Doctors Say https://www.nytimes.com/2019/03/05/health/depression-withdrawal-drugs.html
The crux of the article is that researchers listened to the patient experience of withdrawal by listening to discussions in online forums.
In the same thread on Connect of over 3,300 messages, a member shared this:
“Well I ended up in the Emergency Room today again because the panic attacks wouldn’t stop. In a way [it was] a good thing I went because the Emergency room Dr. really took the time to listen to me and I also showed her a lot of the posts everyone has been sharing about tapering off Effexor. To my surprise she said I have helped people get off of Effexor and she said everyone in this group is right. I was going WAY TO FAST. So back on 75 mg of Effexor I go. She got a hold of my family Dr., who she is friends with, and told her (my family Dr) we need to start back on 75 mg and SLOWLY taper off.”
What a great experience for this member, who has learned so much from fellow members and received great support through a trying time. How validating for the ER doctor to acknowledge the wisdom of the community!
Lots of related leads in Twitter under the #peersupport tag. In the UK (to reassure concerned professionals!) we sometimes talk more in terms of peers sharing experience rather than advice I.e. the Borkmann model. I am researching the mechanisms behind online peer support and trying to keep up with a rapidly advancing field (@RawsthorneMat) so really appreciate your efforts to pull all this together. Have you seen this? : https://www.researchgate.net/publication/329548832_The_stepped_model_of_peer_provision_practice_capturing_the_dynamics_of_peer_support_work_in_action
Thank you! I like the shift to “sharing experience” and will explore the #peersupport tag.
Claudio Nigg shared this article with me as well:
Peer-delivered physical activity interventions:
an overlooked opportunity for physical activity promotion
Looking forward to continuing to learn together!
@Susannah and Colleen!
Yay #PeerHealthAdvice! We work in collaboration with Mayo Clinic on BecomeAnEX, a digital quit-smoking program with a large, active community. We’ve seen first-hand how an environment where you virtually connect with people can facilitate positive health change.
The EX Community provides a welcoming, supportive environment that complements the evidence-based information and interactive tools of BecomeAnEX.
Like other health-focused social networks, the EX Community provides members peer-based information that can influence the decisions people make throughout their quitting process, such as decisions about taking medication. Our research has shown that exposure to positive sentiment about NRT from peers in the EX Community was associated with increased NRT use when smokers obtained it on their own. Furthermore, BecomeAnEX users who even just “lurk” in the EX Community are more likely to quit and stay quit — that effect is even stronger for those who actively engage with the EX Community.
Similarly to Mayo Connect, the EX Community has countless stories of struggle and success from who have been trying to get the “nicodemon” off their back. Members come together, young and old, smoker, vaper, chewer to share experiences and help others for the sole purpose of freeing people forever from their addiction to nicotine.
Some of our members believe so strongly in peer-to-peer support that they have stuck around for years after their own quit has stabilized to pay it forward to the next generation of quitters.
While the purpose of the EX Community is to help people free themselves from nicotine and tobacco, a lot more has happened here. Friendships have formed and now a growing group of members gather every year in a new place to celebrate their bonds, as well as their accomplishments and personal successes. It’s amazing to see these online friendships provide social support for positive health change on–and sometimes off–the screen.
Thanks, Mark! If you have resources to share, please do – would love to learn more about the EX Community.