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.

Can a Tech Startup Cure Diabetes?

Donuts ARE delicious! But you didn’t need TPOH or Dr. David Shaywitz to tell you that. There is also a downside to donuts, and we all know what that is. Weight gain. And with weight gain and obesity come risks for diseases, most notably diabetes. So can a tech startup stop diabetes with an algorithm and remote log-in? And could this be a new horizon in health care?

Imagine a treatment for Type 2 diabetes that requires neither surgery, medication nor calorie restriction, but rather relies on adherence to a low-carbohydrate, high-fat diet, tracked by regular finger-stick checks of blood chemistry and guided remotely by a team of physicians, coaches and algorithms.

That’s the premise of Virta Health, a San Francisco-based digital health company formed in 2014 and launched officially today, with $37M in the bank from investors including Dr. Robert Kocher of Venrock. The kickoff follows Tuesday’s publication of the results of an uncontrolled clinical study of several hundred patients in Indiana, who will be treated and followed for two years; the just-published data – an interim report of sorts – represent the first 10 weeks of study, sponsored by Virta.

Shaywitz, an endocrinologist and chief medical officer of a genomics data management company, DNAnexus, reviewed the study’s preliminary results, and they are impressive. The number of patients whose diabetic control level reached a healthy range nearly tripled after 10 weeks using the new program and a majority of patients reduced or eliminated use of one or more diabetes medications.

Can the smart use of technology really make people healthier? After all, “disease is messy” and “people are complicated.”

For Shaywitz, the answer seems hard to quantify. Low-carb diets have been a fad for ages, and an uncontrolled clinical study of 10-weeks duration is hardly a harbinger of things to come.

On a personal level, can you imagine a life essentially bereft of birthday cake, pizza, French fries and blueberry pie? After all, the trouble with most diets isn’t that they don’t work – it’s just that they aren’t sustainable. When embarked on for weight loss, just about all fail in the long term; the statistics are staggeringly depressing.

Proponents argue that low-carb diets are sustainable because hunger is attenuated, and weight loss occurs even though calorie counting isn’t generally party of the drill. Perhaps in the context of Type 2 diabetes, patients who respond to low-carbohydrate eating (and at least in the short term, many seem to) might be especially motivated to remain with the program, and enjoy and extend the benefits they achieved.

Moreso, Virta’s use of technology is dependent on people staying with the program, which, after all, amounts to a “d-i-e-t,” and plenty of companies, like Weight Watchers, have been tracking people’s diets online for years.

Virta’s CEO Sami Inkinen, himself a diabetes patient (and not as a result of eating donuts), is no doubt a successful businessman, having sold the real estate website Trulia to Zillow for $3.5 billion in 2014. He is now onto his next venture, turning research on a low-carb lifestyle into an interactive program.

The true benefit of startup innovations like Virta may be in the way they operate, the impact these programs have on patient care, alternatives to traditional treatments, and overall health care cost-savings.

Virta presumably makes money based on number of diabetic patients who reduce their medication load or can drop them entirely. In both cases, profit is based on saving payors (principally employers) the incremental costs of caring for diabetic patients–a difference of nearly $8,000/year on average in the commercially insured population, according to one (somewhat dated) estimate.

Virta describes itself as an “online specialty medical clinic,” with a staff that includes not only coaches who track data and personalize nutrition recommendations, but also physicians who assume medical responsibility for the patients Virta treats, monitoring their response to the low-carb diet and ensuring diabetes medications are adjusted accordingly (generally dialed down or eliminated) as the program proceeds. According to the company, Virta physicians are now certified in approximately 20 states, and moving towards their goal of all 50.

Whether it succeeds may be less a question about personal responsibility and more about whether the company effectively combines health care practitioners with data scientists and software engineers to create a complete experience that changes the way people do things. Technology has changed people’s behavior before. Speed, cost, and ease of access will be defining determinants.