Access to rich data is a cornerstone of producing timely and objective research. Yet this access often comes with high costs, lengthy and complex approval processes, and data use restrictions that can delay or limit research, especially for projects with limited funding.
That’s why the Robert Wood Johnson Foundation (RWJF) tapped AcademyHealth to manage Health Data for Action (HD4A). This program made access to big datasets available to researchers through competitive calls for proposals. It was intended to be a proof of concept—if HD4A served as a conduit between data owners and interested researchers, could this research use that data to answer important research questions and inform health policy -- questions that would otherwise go unstudied?
Time and time again, hundreds of researchers responded to these opportunities, seeking to access and analyze these datasets to illuminate important questions that could advance health care and health policy.
Today, we’re launching a five-part video interview series, featuring RWJF and AcademyHealth staff, grantees, and data providers, to reflect on this journey to democratize data and how the funded research generated actionable insights to create fairer, more effective health solutions that work for everyone. This series is moderated and facilitated by Kevin McAvey, managing director at Manatt Health.
From vision to reality
First up, an interview with Kathy Hempstead, senior policy officer at RWJF, and Megan Collado, senior director at AcademyHealth. Kathy is the visionary program officer behind the HD4A program and believes deeply in the power and promise of making data and analyses widely available to inform health policy. Megan and AcademyHealth, with deep grantmaking experience and a mission to improve health and health care by advancing evidence, brought Kathy’s vision into reality by managing the program since 2016. Together, they experimented along the way with different funding models, data providers, and areas of focus to extend access to these datasets as broadly as possible.
What stood out and why it matters
- Objective and Evolution: The HD4A program was initiated to bridge the gap between data providers and researchers, with the aim of making data available for non-commercial, research purposes. Since its start, it has evolved significantly, expanding the number of participating data providers from 2 in 2017, to 16 in the final CFP in 2024.
- Impact on Research and Policy: The program has funded over 60 projects, enabling innovative research that has informed changes to health and health care policy. Notable examples include research on caps for insulin out-of-pocket costs and prenatal care policies and practices that can improve maternal health.
- Cost of Data Access: A key barrier for researchers has been the high cost of accessing data. HD4A sought to alleviate this by subsidizing data access, although a persistent challenge was balancing a budget that would cover both the project and the data costs.
- Important Broker Role: AcademyHealth provided a critical role in the program by facilitating technical support, managing grants, and helping researchers to effectively communicate their findings to policymakers and practitioners.
- Lessons and Future Directions: The program underscored the need for broader access to diverse data sources and illuminated the importance of reducing data access costs to enable impactful research. There is a desire to see a more permanently available platform for such data sharing, though funding and operational support remain barriers.
What we didn’t see coming
First, there are a couple of ideas in this interview for billionaires out there looking to fund critical data-backed evidence, so take a look if you’re in the market!
Another surprise was the unexpected demand from data providers for their data to be used for social good. Many were eager to see their data utilized in meaningful ways that could drive policy change. This enthusiasm wasn't about the money; rather, they wanted their data to be handled responsibly to produce beneficial insights.
The HD4A program's structure offered a sense of security for these data providers because it vetted the research projects using a collaborative and rigorous review process. This highlights a less apparent, yet significant, value of the program as a trusted intermediary connecting data providers and researchers, ensuring confidence on both sides.
Watch now, and keep an eye out for future interviews
Over the next month, we’ll release a new interview each week on the AcademyHealth blog and YouTube channel featuring conversations between data providers and grantees about liberating private data for the public good. These conversations will explore price transparency, private equity, the importance of representative data in electronic health records, and how data-backed evidence can drive public and private policy change.
Stay tuned, and we’ll see you back here next week!
Join us for this year’s Health Datapalooza on September 4 and 5 in Washington D.C. We’ll have interactive workshops, unconference sessions, and networking opportunities for data innovation stakeholders to exchange ideas and expertise.
LibreChat was utilized to generate key takeaways from the interview transcript. The substance of the post was written by a human author.