New Effort Will Give Researchers Access to Valuable Health Datasets

Apr 24, 2017, 9:00 AM, Posted by Katherine Hempstead

A new program is providing research teams with $750,000 in funding and access to rich health data. In doing so, we're hoping to create opportunities for researchers to use this data to inform policy and improve systems.

Many of us track health data without even thinking about it. With our step counters, fitness tracker apps, and “smart” watches, we collect thousands of points of data about ourselves—data we hope to use to make us healthier and more fit (or motivate ourselves to work harder). Now think about all the data health care providers and insurance companies track. That data, if put together and de-identified to protect privacy, could help researchers spot health trends in certain geographic areas. That data could help researchers see if there are linkages between people with chronic conditions and what type of health plans they choose.

Now, imagine you know about a library of health data, but it’s locked in a room that is in a building that costs money to enter, requires legal negotiation, and is not organized for researchers to use.

For many researchers, this analogy is more real than you think. Many valuable health datasets are actually this elusive. Proprietary datasets may be hard to obtain due to cost, or have technical/systems requirements that make it difficult for researchers to access and actually use.  

That's why we're launching a new research program, Health Data for Action (HD4A), which is supported by AcademyHealth, and joins Evidence for Action (which funds innovative studies to address the gaps in knowledge needed to build a Culture of Health) Policies for Action (which supports research on policies that can help build a Culture of Health) and Systems for Action (which supports research on how systems can better work together to impact health) as one of ”signature” research programs.

With each round of funding, HD4A will make one or more highly valued health datasets available to successful applicants, making these data available to selected teams from broad community of researchers, including those at appropriate federal agencies.

For HD4A’s first call for proposals (CFP), data from the Health Care Cost Institute and athenahealth, Inc. will be made available, along with up to $750,000 in funding. Both datasets are rich in the breadth and depth of their data points. The Health Care Cost Institute’s dataset includes data contributed by three large national insurers—Aetna, Humana, and United Healthcare—and includes annual health care claims for nearly 50 million insured individuals between 2008 and 2015. The dataset from athenahealth, a health care technology and services company, includes 17 million patient electronic health records—including body mass index (BMI), patient demographics, geographic location, and the sorts of providers, including hospitals and physicians, that patients see—from among athenahealth providers. athenahealth is creating this dataset specifically for HD4A.

We hope that this data sparks interesting research questions across a broad range of topics, such as:

  • Are there age or gender differences between individuals who enroll in high-deductible insurance plans and those who choose for traditional commercial insurance plans?
  • What can we learn about insurance coverage and patients with obesity?
  • How does community spending on public health services or in other areas that affect health correlate with how people use health care services?

Who should apply?

Researchers, as well as practitioners in the public and private sector who are working with researchers, are eligible to submit proposals through their organizations. Projects can come from disciplines that include: health services research, economics, sociology, program evaluation, political science, public policy, public health, public administration, law, business administration, or other related fields. However, use of the data under this CFP is restricted to noncommercial use.

At RWJF, our vision is to work with others to build a national Culture of Health—where all are enabled to lead healthier lives, now and for generations to come. We believe deeply in the importance of research, evaluation, and learning to build evidence from many disciplines hat informs efforts to improve health, well-being, and equity. And, we recognize that access to rich data is a cornerstone of producing such timely and objective research.

With HD4A, RWJF can be the conduit between data owners and researchers. We hope HD4A creates opportunities for research teams to use this data that can help inform policy and improve systems to improve health. In future CFPs, we will make other highly valued health data available, with the goal of unlocking more insights into how we can be as healthy as possible.

We’re excited to see where HD4A takes us!

About the authors

Staff portrait of Katherine Hempstead

Katherine Hempstead, senior adviser to the executive vice president, has directed RWJF's work on health insurance coverage. In addition, she works on issues related to health care price transparency and value.

Read her full bio.

Priya Gandhi

Priya Gandhi, research associate in the Foundation’s Research-Evaluation-Learning Unit, assists in developing and guiding research initiatives and evaluations.

Read her full bio.