Patient-Based Health Care … on Facebook?

Bertrand Might has a rare genetic disorder that his family confirmed in 2012 after almost four years of searching for an explanation. Bertrand was the first person ever documented with his disease, called NGLY1 deficiency.

When his family finally discovered what Bertrand was facing, they at least had an answer. But then they faced another problem — finding others coping with the same ordeal.

It’s a common problem for people with unusual illnesses. Because some diseases are so rare, when a family finally gets a diagnosis, they want to compare notes with others to learn tricks and tips for managing their situation. Unfortunately, in such cases, these others are hard to locate. Medical data networks are hard to access and usually don’t have much information in them.

Matt Might, Bertrand’s dad, had a background in tech, and was able to juice a blog post to get picked up in search engines. The post went viral and Might got a lot of news coverage about the problem his son was facing. He has since found 15 people in the world with the same disease Bertrand has.

But not everyone has that success, even when Google and other sites are trying to harness their technological power to make medical data easier to access and control. But for all their efforts, David Shaywitz, Director of Strategic and Commercial Planning at Theravance, a publicly-held drug development company in South San Francisco, says Facebook may already be the best-positioned platform to support patient-centered health care that so many people dream about as the future of medicine.

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. …

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. …

Now, everyone reading this post is probably familiar with Facebook. It’s quirky. It can manipulate what you see and don’t see, whether you can share your opinion or have your opinion banned. It tries to influence what viewpoints should be supported and which should be ignored. And it really only provides an illusion of privacy when, in fact, one false setting and you’ve gone “public” or worse, “live.”

But then again, isn’t publicity what people in the Mights’ situation are looking for? And doesn’t Facebook have a whole lot of people looking for other people to “friend”? Facebook’s influence is unparalleled.

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?”

As Shaywitz notes, Facebook has already seen success in the health care arena, most notably allowing people to list their organ donor status, “an initiative which produced an immediate lift in organ donor registrations.”

Furthermore, as a platform to serve patients, Facebook already has the framework that other organizations are trying to build or replicate. Might told Shaywitz that Facebook could do a lot more, like create an opt-in “find patients like me” service. Shaywitz suggests other applications, like “user-friendly medical data import, sharing, visualization, and analysis.”

Ultimately, however, Facebook already has harnessed what patient-based health care is all about.

What many technologists fail to appreciate about health care 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.

Do you think Facebook can appropriately manage health care databases and connections? Leave your comment.