Data-related grant making is a time-honored philanthropic tactic. In the early twentieth century, the Russell Sage Foundation, among others, conducted some of the first social science surveys as it attempted to increase awareness of social problems. Funding surveys and promoting the dissemination of existing government data continue to be important activities for foundations. But as sources of data and ways of working with data change, opportunities for data-related grant making change as well.
A few recent projects at the Robert Wood Johnson Foundation (RWJF), where I work, reflect its evolving interest in promoting access to data. Several weeks ago we announced a new call for proposals (CFP) called Health Data for Action: Leveraging Health Data for Actionable Insights (HD4A). This new opportunity for investigator-initiated research attempts to increase access to highly valued data sets that are often prohibitively expensive or otherwise difficult for researchers at universities or government agencies to obtain.
At the same time, by partnering with data owners, we hope to also raise their awareness of the value of their data. For the first round of this new CFP, we are working with two longstanding partners that have outstanding data—athenahealth and the Health Care Cost Institute (HCCI). As a result of RWJF funding, these partners will provide access to their data, at no cost, to successful applicants.
Athenahealth is a cloud-based medical software company that has data on millions of patient visits. For this opportunity, the company is making available data related to body mass index (BMI), including patient demographics, payer characteristics, and information about chronic conditions.
The HCCI is another well-known source of health data of great value to researchers. This nonprofit is a multipayer claims database containing millions of commercial insurance claims. The HCCI is making available claims data that include details of health services utilized and payment information.
Both of these partners work with us on other data-related projects. For example, our collaboration with athena has resulted in timely monitoring of trends related to many aspects of patient visits to physicians’ offices. With the HCCI, we have been working on a unique surveillance effort, the Healthy Marketplace Index, which attempts to use the HCCI’s rich claims data to characterize prices, utilization of care, and competition in various health care markets.
The HD4A call for proposals will fund approximately five proposals in this round, with each grantee receiving approximately $150,000 over one year. AcademyHealth recently held a webinar on the HD4A opportunity, which can be viewed here. More than 600 people participated in the webinar.
Brief proposals are due on May 24 at 3 p.m. ET. Data partners will work with us to assess whether applicants’ ideas are well suited to the data, and proposals will be externally reviewed. Depending on the level of interest and the quality of the projects, we may repeat this opportunity next year, potentially with some new data partners. As always, we are eager for suggestions about potential partners and ways to improve this funding opportunity.
Another project, which we announced in April, is not technically new but has evolved considerably since its inception. Since 2014 the RWJF has been attempting to produce a plan-level data set for the research community. The project, Health Insurance Exchange Comparison (HIX Compare), began as a public-use file of silver plans on the Affordable Care Act (ACA) exchanges in all fifty states. Since then, we have worked with a number of different partners and slowly expanded the universe of what is included.
At this point, HIX Compare includes rate and benefit information in standardized categories for the entire ACA-compliant plan universe of the individual and small-group markets, for all fifty states, for the years 2014–2017. HIX Compare is used by researchers, government agencies, journalists, and advocates, as well as industry. As the potential for reform of the individual market grows, the ability to track how coverage and cost sharing may change will be increasingly important.
HIX Compare is still a work in progress and is not yet complete. In particular, we are still missing some plans from 2014. Over the summer, we intend to backfill these omissions and come as close as possible to creating a master list of qualified health plans.
The RWJF’s partner in the HIX Compare project is Vericred, a health data services company. HIX Compare is a public-use file, available to everyone at no cost. Through our partnership with Vericred, we can offer researchers another opportunity related to plan data. Researchers may access network and formulary data for the plans included in HIX Compare at no cost for noncommercial use. Those who are interested can contact Vericred to apply.
Finding new ways to create new sources of data and better build upon existing data will define the path forward for data-related grant making. Efforts made in recent years by federal and state governments and others to promote more open access to data have created many new opportunities for grantmakers. As sources and uses of data change, the opportunities in this space will continue to evolve. The potential created by new methodologies such as use of synthetic data and new de-identification methods is one important area on the horizon, as are the opportunities created by advances in artificial intelligence and machine learning. As always, we are eager for feedback from the field on the value of these new opportunities and for ideas for future work.
“The Off-Exchange Individual Market And Small Group Market: New HIX Compare Data,” by Katherine Hempstead, October 24, 2016, Health Affairs Blog.