Yesterday, I went down to DC to visit the US Dept of Health and Human Services – and presented to their Innovation Council (a cross functional working group on innovation) about opportunities to bring “networked thinking” into the health space.
This is clearly such an important area, with huge opportunities for personal and societal benefit. It’s also one that has been on my mind a lot lately (both Cescalouise and I suffer from chronic conditions: chrons, hashimoto’s / thyroid cancer, mysterious blood clots; my second puberty; two small kids, etc).
In prepping my remarks, I ended up re-watching John Wilbanks’ awesome TED talk on the idea of a health data commons — a mechanism for becoming “data donors” for medical research. The talk is great.
I actually ended up using an idea from Johns talk to frame my presentation, which is this:
health = body + genome + choices + environment
My talk was about “peer networks” and health — and the framing I used was that peer networks (networks of people connected via the web) have dramatic impacts on power and relationships. So, what if we look at each of these dimensions of health through the lens of how individuals’ power and their relationships to one another might change given a networked approach:
(the image in the background is from this MIT study on the relationship between peer network structure and health-related behavior changes)
The idea I came to is that these dimensions of health present a spectrum of relative challenge when it comes to applying network dynamics (largely due to the relative strength of gatekeepers and relative difficulty of using data):
- Environment: Easiest. There are tons of network-oriented environmental health activities (like this one, a crowd-funded distributed air quality monitoring tool). And I include services like Eligible in the “environment” category, as they are collecting and making accessible “environmental” information that is already reasonably accessible.
- Choices: Easier. There are many many startups that are working to help us make better health choices. Services like Lift, and like many of the Rock Health graduates. The MIT study linked above is just one of many that point to the potential for structured social networks to have a real impact on our health choices.
- Genome: Harder. You can go to 23andMe and genotype your DNA for $99, but it’s not a choice everyone is comfortable making.
- Body: Hardest. The data associated with our bodies (lab results, etc) is locked up, fragmented, and siloed. Most of the apps which are approaching the “body” space are using hacks such as manually entering your data, or taking photos of paper records). There are no shortage of electronic EMR systems (like DrChrono) that are starting to digitize more of our health records, but there are not yet any laws or standards for accessing this data broadly. Programs like the VA’s Blue Button (which HHS is working on adopting in some way) are an important start.
I also gave a brief overview of what conditions can help networks flourish. Simple, lightweight data access standards, plus a system for establishing trust among apps that manage personal health data (as my colleague Albert has written about) are central.
I’ve posted my slides to Speakerdeck here.
One question that came up in the conversation afterwards, which I don’t know the answer to, is: how has the financial sector able to achieve the level of interoperability that it has? There are a lot of parallels between personal financial data and personal health data, including many common privacy concerns, and finance is way, way ahead in terms of digital access & interoperability.
Another big takeaway for me was that I need to start using more of this stuff. I am a member of Patients like Me, but it hasn’t really been doing much for me. There are lots of other tools out there and I’m going to start trying them.