Real-world data sources, from claims and electronic health records to retail scanner data, can yield valuable insights that inform better health policy and practice. Yet researchers can face major barriers when trying to put those data to work, including high costs, access requirements that slow project startup, and learning curves associated with navigating an unfamiliar new data source.
Data access grant programs can help funders address these barriers, opening the door to new lines of inquiry and research innovation that might otherwise remain out of reach. These programs connect researchers to new data sources they may not otherwise encounter and create opportunities to explore emerging or understudied topics.
But access alone doesn’t mean researchers can use the data effectively. The value of these programs partly depends on what happens after access becomes available. Researchers need the right conditions to develop feasible studies and make effective use of the data, so program design is an important part of a funder’s investment in data access.
The Robert Wood Johnson Foundation has expanded access to administrative and commercial data through programs that help researchers answer pressing health policy questions. These programs include the Food and Health Research Using the Consumer Food Data System, Research on Diet-Related Health, and Health Data for Action. Mathematica has supported these and similar efforts by coordinating calls for proposals, helping researchers access data, providing technical and analytic support to research teams, and helping to disseminate research findings.
Drawing on lessons from this work, we highlight five considerations for designing effective data access grant programs and describe the benefits these programs can create for awarded researchers as well as for funders, data providers, and the broader research community.
Establish clear roles and communication early
Data access grant making requires intentional collaboration between funders, data providers, technical assistance partners, and researchers. Bringing partners together early is critical for clarifying the scope and priorities of a grant program, processes for reviewing applications and launching awards, and plans for supporting researchers during grant implementation.
Technical assistance partners can play a key role in enabling this collaboration by coordinating application review, connecting researchers with available supports, highlighting common challenges to funders and data providers, and supporting the dissemination of findings. Ultimately, this early collaboration and communication promotes smoother grant implementation while helping to build the relationships and infrastructure needed for future efforts.
Provide clear data documentation up front
Researchers are more likely to propose feasible studies when they understand the data from the outset. Early access to comprehensive data documentation can provide a key foundation. Direct access to data providers and technical experts—through webinars, office hours, or other forums during the application and grant phases—can help researchers identify limitations, understand nuances in the data, and refine study designs before problems emerge. Providing researchers with detailed feedback about their applications related to data availability and limitations can also help mitigate obstacles during implementation.
This bidirectional exchange between researchers and data providers strengthens individual research projects while helping data providers improve documentation, better understand how researchers use the data, and identify ways to improve the data’s value for future users.
Pair access with technical assistance and peer learning
Researchers using new data sources benefit from intentional, ongoing support throughout the research process. This support can include helping them develop research-ready analytic files or connecting them to data, methodological, or subject matter experts who can troubleshoot specific challenges.
Creating opportunities for researchers to learn from one another can be just as impactful as expert technical assistance. During virtual peer-learning roundtables or in-person convenings, researchers can work through common challenges together and share emerging findings. Beyond strengthening individual research projects, these exchanges can also foster a sense of community, build researchers’ professional networks, and spark ideas that lead to future collaborations.
Build in realistic timelines and flexibility
Research projects using novel, real-world data sources sometimes take longer than anticipated. Awarded research teams may need more time to negotiate and coordinate data access, understand data nuances, and select appropriate analytic approaches. Researchers may also need continued data access after the formal research period while they revise manuscripts or prepare for conference presentations. Rigid or aggressive timelines may create unnecessary barriers.
Funders should establish realistic timelines early in the grant-making process and tell researchers about options for extending data access and grant periods when needed. This flexibility can help researchers respond to emerging insights, their evolving understanding of the data, and changing circumstances, ultimately increasing the usefulness and impact of their findings.
Tailor support to researcher needs
Grants that provide only data access may be less beneficial to researchers with fewer institutional resources than to researchers with more resources. Early-career researchers and those at smaller institutions may have less access to the analytic, administrative, and financial resources they need to conduct research using complex data sources. Researchers, particularly those in soft-money environments, may prioritize fully funded projects over opportunities that focus only on data access.
Funders seeking to broaden participation should consider pairing data access with other resources, such as additional financial support to cover researchers’ time, expanded technical assistance, and individualized mentorship. By doing so, funders can bring more researchers, institutions, and ideas to the table while helping build long-term research capacity at smaller institutions or those with fewer resources.
Data access grants can enhance the research ecosystem and drive innovation
Well-designed data access grant programs can do more than fund a handful of research projects. They can also introduce researchers to data they might not otherwise use, expand the questions researchers can pursue, and bring new researchers and institutions into the field. These programs can also generate valuable learning about the data themselves. Funders gain a clearer view of how the data can help answer important policy questions, and data providers receive feedback that can improve documentation and user support. As findings are disseminated, the broader research community may be able to identify other research questions and applications for the data.
Over time, these investments can provide useful insights on how to use emerging data sources effectively, paving the way for new applications of the data, new partnerships, and new discoveries that strengthen policy and practice. For funders, that broader value is worth considering when designing data access programs.
