I have lots of wonderful friends, but today’s blog is inspired by one in particular: Susannah Fox. You may know her as the former Chief Technology Officer of the US Department of Health and Human Services (back when Human still meant something), or from her prior stints at Robert Wood Johnson and Pew Research (or from her Tech Tonics podcast episode findable HERE). Susannah is a person who deeply cares about other people and about health and about how people can help other people with their health health. She has been spending a lot of her time lately turning this into something actionable.
When you’re down and troubled
And you need some love and care
And nothing, nothing is going right
Close your eyes and think of me
And soon I will be there
To brighten up even your darkest night
Carole King lyrics from “You’ve Got a Friend”
In particular, Susannah has been thinking hard about how peer-to-peer health can make a fundamental difference in how patients feel and heal; and because I so support and agree with her, I am writing today to introduce you to the video she has produced about the topic, entitled Your Community May Be Your SuperPower: Peer-to-Peer Health Advice? (10 minutes and with animation that is lovely to watch – who knew she had such a great radio voice?). Susannah’s hope is that this video will go viral and get to all the people who need it (the video appears in full at the bottom of this post).
For those of you old enough to remember the Faberge Shampoo commercials of the early 80’s, you will understand first hand where the concept of viral marketing came from. In that commercial, Heather Locklear says she will tell two friends about the product, and they will tell two friends, and so on – the original social network! And similarly, I would like to tell all my friends and followers about Susannah’s video so you will tell two friends, and so on. You can find the video at the bottom of this post – please share it far and wide, or at least with two friends.
You’ve got troubles, and I’ve got ’em too
There isn’t anything I wouldn’t do for you
We stick together and can see it through
‘Cause you’ve got a friend in me
-Randy Newman lyrics from “You’ve Got a Friend in Me”
I asked Susannah to give me some more color about what led her to produce the video and what we all need to know about peer-to-peer engagement in healthcare. Here is the conversation:
Me: Why did you produce Your Community May Be Your SuperPower: Peer-to-Peer Health Advice?
Susannah: Because I want more people to know about the superpower of community.
About 15 years ago, looking for early indicators of new health and tech trends, I started asking people who had survived a major health crisis: How did you get through it? What made the difference? Over and over again, one person after another told me that either they found someone just like them or someone else found them with a piece of information that changed everything. Someone who had received the same diagnosis, faced the same treatment choices, or lived through the same nightmare that they were experiencing. Their suffering wasn’t singular. My colleagues at Pew Research and I started tracking this peer-to-peer health care phenomenon and found that one in four U.S. adults (24%) said they turned to others who have the same health condition during their last bout with illness.
As I dug deeper into the academic literature, I found more and more evidence that peer health advice is a proven, positive intervention for so many aspects of any health challenge. Yet because peer expertise it’s not a drug or device, it doesn’t have a marketing campaign to tip it over into the mainstream. It’s like how Michael Pollan describes the grocery store, “Anything screaming for your attention with health claims is probably not as good for you as the vegetables lying there as silent as stroke victims” (his words, I swear!). See? Now you may never walk past a zucchini again without thinking more kindly about it.
Mike Evans, MD, and I started talking about how to get more people to tap into this effective — and generally free — resource. Mike and his team at the Reframe Health Lab are really good at behavior change messaging. Their video, 23 1/2 Hours, took simple advice about 30 minutes of exercise every day, packed up the data and made it seem easy and almost self-evident. It’s been viewed by over 8 million people. I want everyone to know about the value of peer advice like they know the value of 30 minutes of exercise. Once we added Wendy Sue Swanson, MD, MBE, to the team, we were off and running toward behavior change Nirvana (or so we hope).
You just call on me brother, when you need a hand
We all need somebody to lean on
I just might have a problem that you’ll understand
We all need somebody to lean on
-Bill Withers lyrics from “Lean On Me”
Me: What’s the impact you hope to see and how will you know if it worked?
Susannah: I’ve always said the internet is the de facto second opinion in the U.S. But doctors like Wendy Sue Swanson suggest it might be the new first opinion (hence why she blogs and uses social media extensively – hoping her patients get great information first). I want patient searches to be more useful – better – for their experience because they connect with peers ahead of them on a particular journey.There are already some great companies in this space: Smart Patients, Inspire, and PatientsLikeMe, plus all the thousands of niche communities you can find on Twitter, Facebook, Yahoo, or old-school email listserves. People want their health data, but more, people want each other.
I see nothing but growth potential in this space. It reminds me of when I started tracking online banking, back in the year 2000. Just 18% of internet users did their banking online — it was still a pioneer activity. But financial institutions saw the potential and created all kinds of incentives for people to try it, both carrots and sticks, and now online banking is a mainstream activity across the planet. Savvy health companies are already looking for ways to build communities and ways for people to connect with each other.
Me: Where have you seen the greatest impact of peer-to-peer engagement?
Susannah: I learned most in the beginning when talking with people living with rare or life-changing diagnoses. They often turn to online peers because they have no other choice – those with rare conditions or unusual circumstances can feel like zebras looking for their herd.
What’s striking to me is the universality of their wish list: to learn as much as they can, as quickly as they can, from as many people as they can. We all want that. We all feel alone when we or people we love are first diagnosed (or not diagnosed but in pain or concerned), even if it’s with something common. We should all be able to reach out and get the just-in-time someone-like-me advice we crave.
In my own life my peers have transformed my understanding of health and health care. My online community of fellow food-allergy parents has guided me through my son starting school, going to sleep-away camp, and navigating countless scary birthday parties. Thanks to this group of passionate lay parent experts, we switched doctors, learned about clinical trials we otherwise would have known little to nothing about, and benefited from world-class research out of reach without our peers.
These parents have broken the path in front of us and our walk has been much easier thanks to their generosity with information. I’ve only met a few of these people in real life, yet they are my consiglieres when it comes to my son’s food allergies. Finding them wasn’t obvious to me when my son was diagnosed. No one told me to do this. I’m embarrassed to say that I joined the group years after I began studying the peer-to-peer health care phenomenon. Researcher, heal thyself! The resource of peer expertise shouldn’t be this out of reach in the health care experience.
Me: How can people start practicing peer-to-peer healthcare in in real life? Any specific recommendations?
Susannah: Start small. Poke around on the internet and in groups. It’s okay to start by just a lurk and listen approach. You can learn a lot just by following a hashtag or reading someone’s blog. Listening and learning the vocabulary associated with whatever you’re facing is a fabulous first step to nurture a better sense of control. When you’re ready, you can start asking questions. What’s beautiful about most communities of people dealing with health issues is that they are very welcoming to newcomers. The people who receive you essentially say, “We’re sorry you need us, but we’re glad you’re here.” The internet can be gentle, and it can startle, but when you find those like you I suspect you’ll always feel it was worth it.
Me: Do you have future plans to do something with this concept?
Susannah: Of course, I do, I do, I do! Thank you for asking. But the plans, like anything important, are not yet fully formed. I’ve been collecting stories and evidence about peer health advice, aiming toward a series of articles and likely a book. I couldn’t do what I want without Twitter and Facebook, Storify, and blog posts, my peers and health care workers who support and inform. I’m advising companies and organizations about how to take advantage of the profundity of expertise housed within those who’ve suffered and collected tips and techniques for it to unfold better.
Expert patients add value to the practice and pursuit of preventing, healing, curing, and enduring illness. Peer-to-peer advice will tip and topple into mainstream health care. It’s not a question of if, but when. Hopefully this video and the notions within it are just a needed boost.
Me: Please watch this video and then use your email, Twitter, Facebook, whatever to tell two friends (or more) today!
Here’s a Twitter post for you to lift and use to make it really easy: Check out inspiring & practical @susannahfox video on peer-to-peer health called Your Community May Be Your SuperPower: Peer-to-Peer Health Advice? https://m.youtube.com/watch?v=jCGk2n2zJ-s&feature=youtu.be – about the power of people helping people through difficult healthcare times
Here’s a Facebook or LinkedIn or Email post for you to lift and use to make it really easy: Check out inspiring & practical Susannah Fox video on peer-to-peer health called Your Community May Be Your SuperPower: Peer-to-Peer Health Advice? https://m.youtube.com/watch?v=jCGk2n2zJ-s&feature=youtu.be – about people helping people through difficult healthcare times