I’ve lost track of all the questions about my type 1 diabetes that I’ve answered by turning to the Diabetes Online Community (aka “the DOC”).
It’s been a wellspring of knowledge and wisdom, helping me figure out if I should try new technology, the pros and cons of different diets, tips for travel with diabetes and so much more. And having lived with this disease for 55 years, I’ve been able to reassure anxious people with diabetes and their parents in the DOC, especially newbies, that their problems can be solved.
The benefits of both practical advice and emotional support from peers have been evident for some time in the diabetes community. For years, many have urged healthcare providers to take these community connections more seriously and integrate them into diabetes care. Just recently at the International Diabetes Federation Congress in Abu Dhabi, research was presented for the first time illustrating the importance of both online communities and in-person peer support.
Now, a brilliant expert on health and technology, Susannah Fox, wants people to know that the kind of helpful information and support that’s routinely offered in online communities gives us patients a “superpower.” She recently released this compelling new video titled “Peer-to-Peer Health Advice,” as part of a campaign that she hopes will help others become super-empowered:
The New Superpower: Health Advice from Peers
For those who aren’t familiar with Fox, she’s got some serious street cred. Most recently until January 2017, she served as Chief Technology Officer of the U.S. Department of Health and Human Services (HHS). Before that, she was a key researcher focusing on the culture of the Internet at the Robert Wood Johnson Foundation and the Pew Research Center, a national think tank that explores “issues, attitudes and trends shaping the world.”
Now, as an independent consultant, Fox is working with a number of national health and caregiving organizations that share her mission to “change the world” via making the most of digital health trends (as explained on her "Now" web page).
Fox narrates the video, which was funded by the Robert Wood Johnson Foundation Global Ideas Fund. Its core message is simple and persuasive: if you have a health problem, find other people who share that problem and learn from them.
“When you’re sick,” she tells viewers, “or even when you’re well, information and camaraderie help. And get this: research shows that a small community of people has access to better health information than most individuals alone – more up-to-date and relevant to their situation.”
In other words, she is urging people to learn lessons that are very familiar to the DOC. As Fox recently told me via email: “The diabetes community is one of my favorite examples of how peer health advice and connection can improve people's outcomes, not just heal their spirits."
For example, she lauded the #WeAreNotWaiting movement, as a peer-led community of experts transforming the national conversation about medical device design and access to health data -- and helping people in our community to lower their A1C levels.
“That progress is only being made thanks to peer health advice,” she says.
A Patient Community Evangelist
Fox has been an evangelist for using the Internet to improve health and healthcare for some time, and the DOC has long been on her radar screen.
She noted that the challenges of living with type 1 or type 2 diabetes are perfect examples of what’s been found in a Pew Internet survey: People are likely to turn to clinicians for diagnosis and treatment advice. But they are likely to turn to peers for a quick remedy for an everyday issue.
What if every disease and condition had a vibrant community of peer experts like this?
“That's my vision for transformation -- for the better -- of health across the world,” Fox says.
While her most immediate priority is a viral campaign that uses her video to spread the word about the power of peer health advice, she intends it to be "part of a much larger campaign to raise awareness."
While not giving away all of her plans for this initiative, she indicated that she’s been advising savvy companies and organizations that see a strategic opportunity to encourage and facilitate peer-to-peer conversations, knowing that is what people crave when the chips are down (in addition to access to meds and expert care, of course).
Building a Movement
Clearly, there’s potential to mobilize a broad range of allies to help more people see the value of peer-to-peer health advice.
The field of players and proponents is diverse, from academic institutions like Peers for Progress at UNC and MedicineX at Stanford, to startup companies like PatientsLikeMe, Inspire, and Smart Patients, to major treatment centers.
“We need all hands on deck -- media, research, leaders, policy makers -- and experts like the people in the diabetes community," Fox says.
The DOC certainly should be proud, not only because we’re helping people with diabetes but also because we’ve helped to create a model of peer-based information exchange that has the potential to transform healthcare.
Of course, we’re not alone, and that’s one of Fox’s key points: we’re part of a growing movement.
People with arthritis, cystic fibrosis, asthma and a wide array other chronic health conditions are advising each other in online communities as well as support groups that meet in person. Fox’s goal is for many more people to benefit from these communities.
Addressing Doctors’ Skepticism
One reason for expanding these peer-to-peer health connections is that if we do our own research, we can tell doctors things they don’t know and protect ourselves from medical errors, as e-patient Dave and other prominent advocates have demonstrated.
The point is made eloquently in Fox’s video by Wendy Sue Swanson, a pediatrician and Chief of Digital Innovation at Seattle Children’s Hospital:
“Talking with a peer who has been down similar paths may illuminate something absolutely new that I never would have been able to suggest,” Swanson points out. “In my work as pediatrician and as a doctor using digital tools, I know peers bring wisdom and evidence of all kinds that clinicians cannot always uncover.”
I wish there were more physicians like her!
But what Fox doesn’t mention in her video is the lingering challenge that many doctors are wary of patients who want to discuss treatment options and information they’ve found online. According to a recent Medscape survey of American physicians on patient empowerment, 39% said that patients' research made care more difficult and only 24% said it made care less difficult.
Figuring out how to incorporate the input patients get from “Doctor Google” into decisions about treatments is a daunting challenge, but it needs to be addressed.
What Fox does mention in her video is evidence that the lion’s share of information in online peer health communities is factually correct, and the tiny portion that is not credible typically gets shouted down by the community members. In other words, it’s a self-correcting universe and any participant paying attention is highly unlikely to be misled.
As a longtime PWD, I believe peer-based health communities can help. If more people carefully vetted information and ideas about their health with well-informed peers, I bet skeptical physicians would gain more confidence that patients can be partners who are able to provide valuable insights into the care they need.
If you want to help foster these doctor-patient partnerships, and if you want more people to learn from and support peers confronting health challenges, take a few minutes to watch and send Susannah Fox’s powerful video to everyone you can think of.
People in the Diabetes Online Community know, deep down in our bones, that she’s right. Other people should know it, too.
Thanks for this report, Dan. We agree -- if anyone has the clout and proven ability to take this to the next level, it's Susannah! We can't wait to see what comes from this initiative.