Personally-Generated Health Data – The Next Frontier

Today, I was in San Diego at the Quantified Self Public Health Symposium where I worked with Larry Smarr, Director of Calit2 and Gary Wolf, Director of Quantified Self Labs, and Stephen Downs from Robert Wood Johnson Foundation, to convene a group of researchers, device and app makers, funders and others to discuss the potential and use of personal health data. Personally-Generated Health Data - The Next Frontier Aside from my role at HHS, in my private life, I have a real interest in personally-generated health data. I’ve been tracking various aspects of my health for years and am an avid user of apps such as RunKeeper since I logged my first run in August 2009. In the summer of 2012, I met Jason Levine, a pediatric oncologist who works at the National Cancer Institute. Jason is also a hacker and marathoner who also has a real interest in personally-generated data and, in 2011, had developed an application that moved data back and forth between various fitness tracking systems. In the summer of 2012, Jason and I started to discuss the potential impact personally-generated data can have on the greater health care system. Since Jason and I first connected, the field of personal health devices has continued to evolve and the potential use of personally-generated data has only increased. As I see it, there are four major areas that we as a community need to focus on if we are truly going to unlock the potential of personally-generated data.

  1. Who owns the data? – Personally generated data comes from an individual, but private companies are the owners of the platforms keeping the data. This is an issue that is being dealt with in many areas, but given the potential of this data to fundamentally help individuals, I think it’s even more pressing that we deal with it as soon as possible.
  2. What role does privacy have? Privacy rights for personal health information is fairly well defined by various federal laws such as HIPAA, the Privacy Act, 42 CFR Part 2 and others but where does the data that is generated from devices such as activity trackers fit into this ecosystem?
  3. What do data standards look like? This is an issue we are continuing to address in the electronic health record world, as there are systems that don’t use the same terminology or measurement units. We face the same challenge with personal devices. For example, a Nike+ step is very different from a Fitbit step, and if we hope to use this data in a clinical setting, we’ll need to understand the standards.
  4. 4. What are the incentives to participate? In order for this movement to ultimately recognize its potential, we need people to participate. There are many incentive models being experimented with right now, but is there an overarching public health movement that this can be tied into?

At the Symposium today we looked at each of these questions and attempted to generate some specific next steps to achieve progress on these goals. For example, an issue that was identified was a need for a common, open source Terms of Service document that app and device makers could leverage. Attendees from Creative Commons and RunKeeper agreed that this would be worthwhile to work on and are going to be moving ahead to try and make this happen. We asked the attendees to reconvene virtually in ninety days with some concrete partnerships and actions, so stay tuned for more details!