I was thrilled to speak last week at the Quantified Self Public Health Symposium. The event featured 100 attendees including Bryan Sivak, CTO of the US Department of Health and Human Services. It focused on “improving access to personal data for individual and public health benefit.” Topics included ways to integrate the individual self-tracking projects into central databases available to researchers and clinicians and ways to make medical data more accessible to patients.
Gary Wolf and Ernesto Ramirez of QS always do a great job organizing their events and leading thoughtful discussions. Susannah Fox of Pew Research Center’s Internet & American Life Project talked about “Secret questions, naked truths” and the power of presenting personal data as a way to expose insights in our own lives. Larry Smarr of Calit2 did an amazing presentation on his own self-tracking and his vision for creating systems to integrate quantified self projects into mainstream scientific research, moving from N=1 to N=1,000 and beyond.
I spoke about data visualization and the design choices I made in making the poster of a year’s worth of my diabetes data. The audience was composed of academics, clinicians and industry representatives. From their feedback, it seems that design is still a challenge for a wide range of professionals. Their frustration started with the choice of the visualization tools available to non-specialists. Additionally, they spoke of the difficulty in scaling solutions across a patient population. While one report could be insightful for a few patients, the same report often provided minimal benefit for others with the same medical condition. I expect that there will be a great deal of progress in designing solutions for a range of conditions in the coming years. I expect that a carefully crafted group of designs will be beneficial in analyzing not only raw data, but the relationship between various data types for each condition. I hope my work can help with this for the diabetes sector.
During the conference, there was an interesting comment by someone from Kaiser Permanente. He believed that regulation is required to force device manufacturers to open patient data streams of patients. He believes the current solution of letting the market decide has failed because these companies have no incentive to go this extra step. Often times it’s the opposite, with manufacturers mistakenly believing this data is an asset that should be guarded. I do agree with this idea of regulation and believe freeing the data would make it much easier for innovation of new data services to occur.
There was also a very thoughtful discussion about integrating privacy protections within systems that aggregate data across conditions. While I am very open to sharing my own data, it was interesting to hear about the potential unintended consequences for patients. Dr. Joyce Lee talked about issues she’s encountered within the type-1 diabetes community, including adolescents and parents who have overshared.
I was also glad to see Open mHealth get a chance to present some of their work on data standardization and interoperability. Because they’re based in NY, I’ve gotten to know them and their work. Looking forward to the new features they’re planning to release soon.
Overall, it was exciting to be a part of such a great event attended by people I’ve been following for years. It’s encouraging that HHS is thinking about the topic of self-tracking and ways of integrating it into the greater health care system. The QS community is a unique collection of early adopters thinking through the challenges and potential of patient-generated data. I think their work will continue to positively influential the the health care system.