Secretary of Health and Human Services Kathleen Sebelius and US Chief Technology Officer Todd Park co-authored a White House blog this week about the high-points of the recent Health Datapalooza, touting a number of accomplishments. And certainly, they deserve credit for trying to unleash the forces of innovation on a bureaucracy as big as HHS.
However, looking more deeply into some of the high points mentioned in the blog, one discovers not everything is as self-evident or available to data users as it might appear. For example, they touted the following:
- They mention the “top 100″ and two featured applications (mHealthCoach and Archimedes). But they do not provide the actual list with links to them for us to see, try, and judge for ourselves.
- They mention the launch of a significantly upgraded new version of HealthData.gov. But they do not say what the benefits are from this new version and I found it difficult to use and to retrieve the actual data and see their value.
- They provided some numbers on the growth of this activity and the claims: “we’ve begun to see these innovations make a difference in the lives of millions of Americans across the country” and that this “can take health data and turn them into amazing new products and services that are already helping millions of Americans, contributing to economic growth, and creating jobs”. But no actual data is provided!
Recently, one of the featured applications, Project REACH, provided a list of finalists. Since it also included the list of data sources, I decided to see how easy and useful it was to build that app for homeless veterans. I found two of the eight data sets were unusable. They need to provide interesting and usable data for building innovative apps.
I was very surprised that one thing Sebelius and Park did not mention in their blog, which I thought was the highlight of the conference, and is perhaps one of the most promising for achieving their lofty goals, is a mashup of genetic, health record, and health research data to produce better individualized treatments and costs savings.
The Honorable Bill Frist described the exciting work that he is involved in to improve the outcomes of heart transplant surgery by individualizing the treatment of patients that reject the normal organ transplant medications due to genetic factors.
Another missed opportunity in the blog, and my biggest disappointment, was that the serious work of dedicated medical researches with health data world-wide that was not even mentioned.
Contrast that with the recent TEDMED 2012 Conference on the “20 Great Challenges of Health and Medicine in 2012″ for example.
The TEDMED community includes thoughtful individuals and institutions from the fields of medicine, the sciences, technology, government, business, education, the law, religion, the armed forces, media and the arts. This extraordinarily diverse community gathers at the John F. Kennedy Center for the Performing Arts in Washington, D.C., and – via remote simulcast – in big-screen auditoriums across America in medical schools, research institutions, teaching hospitals, universities, foundations, health-focused corporations and state and federal agencies.
My suggestion to Secretary Sebelius and Federal CTO Park, however, is to show us the data that shows that this is “helping millions of Americans, contributing to economic growth, and creating jobs” and to do more in raising the visibility of those efforts to reach the stature of the recent TEDMED 2012 Conference.