When you think about tech giants playing in healthcare, you think of Google and the work Verily is doing; you think of Apple and their HealthKit and ResearchKit applications, as well as their rumored plans to organize all your medical data on your iPhone; you may even think of Amazon and their potential entry into the pharmacy market.
But the name you may hear about least–Facebook–may actually be the company influencing healthcare the most, and may also be the best positioned to support the patient-centered future that so many imagine and that Eric Topol described in The Patient Will See You Now (my Wall Street Journal review here).
At first blush, Facebook seems to be doing remarkably little in health; their most notable effort has arguably been providing the opportunity to list your organ donor status, an initiative which produced an immediate lift in organ donor registrations.
But while participating on a panel at a recent Festival of Genomics meeting in San Diego, I learned that apparently, Facebook is where patients with rare conditions, and their families, often go to connect with others in similar situations–typically via private groups. Apparently, these can be extremely specific–the example the panelist cited was childhood epilepsy due to one or another individual genetic mutation. Families reportedly self-organize into private groups based on the specific mutation, and share experiences and learnings.
This reminded me of the story of Bertrand Might and his family, elegantly told by Seth Mnookin in the New Yorker in 2014, and by Bertrand’s father, Matt, at several precision medicine conferences in Boston organized by Zak Kohane. (Disclosure: Both Might and I are adjunct members of Kohane’s Department of Biomedical Informatics at Harvard.)
When the Mights were trying to diagnose the rare disease afflicting Bertrand, genetic sequencing was able to help. (One more disclosure/reminder: I am Chief Medical Officer of DNAnexus, a cloud genomics company in Mountain View, Calif.) But when they then wanted to find other families with similar children, they found themselves stuck; effectively, medical data networks weren’t nearly dense enough, or well-populated enough, or usable enough, or accessible enough, to permit the Mights to successfully search for this information.
Consequently, as a tech expert, Matt Might resorted to truly dense networks, posting a deliberately crafted blog post that went viral and was picked up by search engines and other news outlets. This approach netted results.
When I recently told Might about the mutation-specific Facebook communities, he wasn’t surprised, and told me that he was “impressed by what patients can already do on Facebook” and other “established systems” including Google, Wikipedia and Twitter.
Google, for one, seems keenly interested in asking how its platform could be used to improve health (remember its intriguing and unfairly maligned Flu Trends effort–see thisoutstanding Alexis Madrigal essay). Might suggests Google might help rare disease patients by enabling them to connect with each other (if they want to) “on the basis of search history alone.”
In 2014, Facebook reportedly expressed an interest in nurturing patient communities, yet “we’ve heard nothing more about this” MedCityNews reported last year. The irony, of course, is that because of its features and popularity, Facebook has organically emerged as arguably the most attractive platform for patient groups to organize–despite the far more deliberate efforts of other companies and organizations that offer platforms aimed at bringing patients together. (Addendum: see this fascinating video, pointed out by a reader, featuring a pathologist, Jerad Gardner, describing to peers his experience engaging with patient communities on Facebook.)
If we truly believe what many profess–that the center of power in healthcare will relocate from physician to patient–what better platform for health than a digital community already integrated into the lives of a huge number of patients? (I assume I’m in the minority in not having a Facebook presence–I’ve avoided it out of concern it would become too much of a time sink.)
The point is that for all the work entrepreneurs are now doing trying to create de novo platforms aimed at serving the needs of patients, I wonder if patients would ultimately be better served by Facebook leaders recognizing the incredible opportunity that’s been dropped in their lap, and making a deliberate effort to discover and address the needs of the patients already on their platform. For example, Might suggests Facebook could “implement an opt-in ‘find patients like me’ service.” I can imagine a host of other utilities and applications (including user-friendly medical data import, sharing, visualization and analysis) aimed at better serving the needs of patients, and of patient communities.
Will Facebook take a more serious run at health? Certainly Zuckerberg (the son of a dentist) and his wife, pediatrician Priscilla Chan, have supported a range of health-related initiatives, including upgrades to San Francisco General Hospital (now named after the couple), the Chan-Zuckerberg Initiative (whose science is led by distinguished biologist Cori Bargmann–star of Natalie Angier’s classic Natural Obsessions) and the Breakthrough Prize (which I’ve discussed critically here).
As I’ve long argued (e.g., this Atlantic post, this New York Times op-ed), what many technologists fail to appreciate about healthcare is the importance and value of relationships, of human connection, of community. At its best and most foundational, medicine is about relationships, not transactions. Most of medicine, health and wellness isn’t about showing up with a discrete question and leaving with a discrete answer. Our experience of illness and disease is so much more complex and nuanced, individualized and personal, a process of understanding that unfolds over time. The best physicians and care providers recognize this, and appreciate the importance of listening and the value of longitudinal connection.
Facebook, at its core, is about cultivating relationships–in marked distinction to the transactional core of Google (search) and Amazon (deliver). The core mission of Facebook is to connect people–and to help good things emerge from these connections. What better forum than Facebook to bring patients together–and what better platform for health?
You may also like:
You should all be happy then to learn how Facebook is choosing to participate in health care:
Make boatloads of money from selling its “users” to pharmaceutical companies…. Platforms are evil…. ALL platforms are evil.
@Bobby – My Foer book should arrive any minute now…. courtesy of Amazon… 🙂
The potential of Facebook and Google as platforms is limited by their secrecy. Medicine is not secret and trust is not built on top of hidden algorithms and closed governance. This excellent post makes clear the utility of the platforms in a medical domain that has not kept up with information technology. But fundamentally, neither Facebook nor Google has given us much of a reason to trust them and that will need to be solved before they can play a greater role in medicine or science or the focus will shift to more distributed platforms as Michael points out below.
Bobby makes a good point with his attached link. If you think about the security and privacy implications (more so with personal health care data), the only logical direction/solution is towards a distributed network of nodes where personal data is stored and not in a centralized, monopolized entity. Yes, it’s much easier to capture individuals where the barrier to entry is easier with a centralized system but we may be at a tipping point where people are starting to ponder at other solutions as more and more examples of hacking/security flaws become more and more commonplace (ie Equifax scandal). Personal health care data may be the touchstone where this kind of re-imagining and implementation can start.
A cautionary view:
Ha. I think Wapo is contractually obligated to run a quarterly “Beware of the Evil Tech Industry” op-ed as part of the Bezos deal to demonstrate editorial independence …
The salient points relating to this post are in Franklin Foer’s argument. Has nil to do with Bezos’ WaPo. I first learned of the Foer book over at Vox:
Very good article, and I agree with Bobby below. It may be that Facebook need not be at all deliberative re healthcare. People may form their own ways of using Facebook, which they apparently already have. I’ve found that support groups are one of the most dynamic of therapeutic means, whether it be for serious illness or wellbeing. Well done David.
Interesting. I like this: “At its best and most foundational, medicine is about relationships, not transactions.”
The “consumer/transactional” paradigm still has prevailing heft, though.