There’s an underlying thesis of the open data movement in health care: the more information collected and made available, the more likely good things will happen.
Managers of public and private health data are increasingly finding value in making information that used to be difficult to come by readily accessible.
“It’s one of those formerly well kept secrets that is now rapidly becoming known and appreciated all over the world,” said Daniel Stein, co-founder of Stewards of Change. The New York-based organization helped organize Open DataFest this month in Sacramento, the second annual statewide gathering of open data proponents. California HealthCare Foundation, which publishes California Healthline, funds Stewards of Change and helped organize the Sacramento event.
The difference between last year’s event and this year was marked, Stein said.
“Last year, California was sort of slow off the opening gun but now California is leading the charge,” Stein said.
Nirav Shah, former New York state commissioner of health and now senior vice president and chief operating officer for clinical operations at Kaiser Permanente in Southern California, agrees.
“California has really leap-frogged the rest of the country, mostly because of Michael Wilkening,” Shah said.
Wilkening, undersecretary of the California Health and Human Services Agency, helped define and direct California’s new approach to open data.
“Our data already are advancing our efforts to increase transparency and support data-driven decision-making,” Wilkening wrote in a blog on the Stewards of Change website.
“We expect that this trend will continue and our data will assist government employees, companies and nonprofit foundations, among others, to make more informed decisions and result in better outcomes for those who rely on our programs,” Wilkening said.
A growing array of information on diseases, chronic conditions, demographics, health care workforce, facilities and services is offered on the California HHS Open Data Portal. The idea is that offering all this data to any and all who want to mine it might spark new ideas, new treatments, new approaches to improve public health.
Most of this information has been available for years, but required Freedom of Information Act requests to get it and then huge amounts of time and energy to manipulate it to make it digestible and useful. Information technology and savvy application developers have made it easier to crunch mountains of data.
New York and Illinois were the first two states to embrace open data. Other states are showing interest.
“California has rewritten standards and is taking data sharing to a whole new level. Maybe New York did it first, but California is leading the way now,” Shah said.Legislation Sparked by Data Crunching
Here’s an example of how open data can influence public policy:
Eleven bills in the California Legislature this session are aimed in part to help California homeless youth. Some — perhaps all — of the bills are linked to open data efforts by a consortium of organizations — the Lucile Packard Foundation for Children’s Health, the California Homeless Youth Project and the National Association for the Education of Homeless Children and Youth.
More than a decade ago, the Packard Foundation for Children’s Health launched a campaign to help private and public agencies find data to help improve kids’ health.
“What we ran into back in 2004 was that not much data was easily available or accessible, nobody had the right software to download these big pieces of data and it was very difficult to make the information appear in any usable way,” said Regan Foust, data and research expert at the foundation.
Now, with more sophisticated software and the willingness of agencies to open their data sets, information is more readily accessible and usable, Foust said.
The foundation built a website — kidsdata.org — to make information available on a range of more than 50 topics from bullying to nutrition. The information can be approached from several vantage points, including geographic and demographic.
Early last year, Foust connected with an official at the California Department of Education who provided information on homeless children. Foust sought data crunching expertise from the state Homeless Youth Project and the National Association for the Education of Homeless Children and Youth. Together, they mined data and last fall came up with regional, county and district numbers of homeless youth and their problems and needs.
“The work we did last fall produced some really useful tools,” said Shahera Hyatt, director of the California Homeless Youth Project.
“We were able to make the situation very transparent for legislators. We went into their offices and said this is how many homeless students there are in your district and this is what they need,” Hyatt said.
Legislators listened and responded with 11 bills addressing various aspects of homeless youth in California:AB 801, by Assembly member Richard Bloom (D-Santa Monica); AB 891, by Assembly member Nora Campos (D-San Jose); AB 982, by Assembly member Susan Eggman (D-Stockton); AB 1166, by Bloom; AB 1225, by Assembly member Shirley Weber (D-San Diego); AB 1228, by Assembly member Mike Gipson (D-Carson); SB 252, by Sen. Mark Leno (D-San Francisco); SB 342, by Sen. Hannah-Beth Jackson (D-Santa Barbara); SB 445, by Sen. Carol Liu (D-La Cañada Flintridge); SB 608, by Liu; and SB 636, by Liu. Next Step: Private Data Sharing
So far, most of the health data being offered is from and through public health agencies — HHS shares Medicare and national hospital data, and California and other states share Medicaid and public health data.
A logical next step in the evolution of open data would be private organizations sharing their data. There has been reticence from some private organizations to move forward for two main reasons — worries about divulging individual medical records and the proprietary nature of some information.
Advances in aggregating data without fear of individual information being divulged and recognition of the clinical and policy-making value of large sets of data may be changing the information sharing landscape.
When might private organizations like Kaiser, Blue Shield and Blue Cross, United Healthcare, Sutter and others, begin to open their data?
“We haven’t yet seen the tipping point at which that might start to happen, but we already are having conversations about that,” Shah said.