Blog Center for Community Health Partnership & Research

Considerations for data-sharing and community-engaged research

Written by Katie Wiedeman, MSW candidate, Brown School at Washington University in St. Louis

Photo: Scott Graham, Unsplash

Beginning in January 2023, the National Institutes of Health (NIH)’s new Data Management and Sharing Policy will take effect. This policy requires that grant applicants submit a plan for data management within their application. That plan should facilitate data-sharing to the fullest extent possible through publicly accessible and free data repositories. This policy was initiated in 2009 under President Obama in order to increase the accessibility of publicly funded research. After years of development, the new NIH policy will reduce redundant data collection, spur scientific innovation, and support the transparency of research practices. This data-sharing policy also compares to FAIR data sharing standards, a best practice among researchers for the usage of data that suggests data should be easily found, accessible, and able to be replicated. As researchers, this policy update has a number of implications for the collection of data and collaboration with community members.

As always, an essential component of informed consent is that community partners and participants should be made aware of how their data will be used and shared. Data-sharing with community partners has been traditionally seen as one of the main benefits of community-engaged research and should continue to be highly valued. When working with community members, researchers should clearly explain the implications of their data-sharing plan, as submitted to NIH, and how project data will be used. Participants should be reassured that data shared under the NIH policy will be de-identified too. NIH does make several exceptions for data that may risk identification or is otherwise prohibited due to other regulations, such as the Health Insurance Portability and Accountability Act (HIPAA). Moving forward, explaining the NIH policy and the project-specific data sharing plan to community partners should be incorporated into the process of formalizing an academic-community partnership. Being upfront with community members about the implications of the NIH data-sharing plan at the beginning of partnership development will help establish trust that is essential for a strong partnership.

Another benefit of the new NIH data-sharing policy is the opportunity to share data across research projects, thus reducing the need to continually produce data that might have already been collected. In particular, studies that take place among small population groups have the risk of recreating data that has already been published. This unnecessary duplication became especially apparent during the COVID-19 pandemic when several researchers were studying the same populations simultaneously, resulting in disengagement and frustration among participants, potentially decreasing their full involvement and the quality of the data. For researchers, this newfound data accessibility can decrease data creation workload, instead allowing for more focus on evaluation, analysis, and implementation. Therefore, this NIH policy has benefits for both community members and researchers.

Researchers who are applying for NIH grants should be thoughtful in their approaches to this updated policy and how it will impact their community partners. While this recommendation may require more extensive communication about the shared use of data, it is an important step forward to both comply with NIH protocol and reinforce the partnership between academic researchers and community partners. Considering the community’s needs from development of a data-sharing plan to the implementation and communicating the data-sharing policy should be a key focus for researchers who want to be engaged in their community.