ATLANTA—Data sharing among researchers has the potential to advance research in Alzheimer’s disease and related dementias, but preliminary research from Georgia State University suggests that investigators may experience barriers to optimal data-sharing practices.
Funded by a five-year, $2.8 million grant from the National Institute on Aging, a multi-institutional team led by Jalayne Arias, Associate Professor in the Department of Health Policy and Behavioral Sciences in the Georgia State University School of Public Health, will identify and evaluate barriers and facilitators to sharing research data. The project aims to develop recommendations and guidelines that support collaboration and accelerate the discovery of new treatments.
“In order to maximize the value of federally funded research, we need to make data more broadly available,” Arias said. “In our previous work, we identified gaps between data-sharing policies and how they were being implemented. This led us to examine the barriers that are preventing investigators from sharing data, particularly in light of the NIH’s 2023 Data Management and Sharing Policy.”
She notes that her preliminary research identified several challenges, including the time required to prepare data for sharing—such as redacting personally identifiable information—and concerns that sharing data might hinder a researcher’s career by making it more difficult to publish their findings in a peer-reviewed journal or by giving other researchers a competitive advantage.
To build upon their findings, Arias and her team will survey 1,000 researchers nationwide who study Alzheimer’s disease and Alzheimer’s disease related dementias. Surveys will collect information on participants’ experiences, practices, and perceptions of barriers and facilitators to data sharing. Following the survey, 40 researchers will be selected for in-depth interviews. The research team will then compare the findings of their surveys and interviews with the policies of journals, funding agencies, academic research centers and other organizations involved in therapeutic research. At the conclusion of the study, Arias and her team will issue recommendations to minimize barriers to data sharing.
Arias noted that sharing research data related to Alzheimer’s disease and Alzheimer’s disease related dementias can be particularly challenging because of concerns about the confidentiality of study participants. A 2019 study published in the New England Journal of Medicine, for example, found that face recognition software could be used to identify study participants based on MRI data.
Although her study is specifically focused on Alzheimer’s disease and Alzheimer’s disease related dementias, Arias said her methods and findings have implications for other fields of biomedical research.
“When we get to the end of the five-year study, we expect to have guidelines that are actionable and implementable and that investigators looking at other subfields can use as a starting point,” Arias said. “Data sharing can accelerate research and discovery when done properly, so we’re trying to optimize it.”
Co-investigators on the study are:
- Leslie Wolf, Distinguished Professor and Professor of Law, Georgia State University College of Law
- Karen Nielsen, Assistant Professor, Department of Population Health Sciences, Georgia State University School of Public Health
- Eric Campbell, Professor of Medicine and Director of Research, University of Colorado Anschutz Medical Campus
- Michelle Mello, Professor of Law and Professor of Health Policy, Stanford University School of Law
- James Lah, Associate Professor of Neurology, Emory University
- Dragana Bolcic-Jankovic, Senior Research Fellow, Center for Survey Research, University of Massachusetts Boston
- Jennifer Yokoyama, Associate Professor, Memory and Aging Center, University of California, San Francisco Weill Institute for Neurosciences
The project reported in this news release is supported by the National Institute on Aging of the National Institutes of Health under award number R01AG080093-01. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Story by Sam Fahmy
Associate Professor, Department of Health Policy and Behavioral Sciences
School of Public Health
Jalayne Arias' research focuses on the policy, legal, and ethical questions that arise in Alzheimer's disease and related dementias, aging and neurosciences. She is a multidisciplinary researcher and scholar leading studies at the intersection of science, health care, policy and law. Her research portfolio addresses critical policy, social, legal, and ethical challenges for older adults and neurosciences.
Her prior and ongoing studies have identified employment and insurance discrimination based on emerging techniques to identify risk for Alzheimer’s disease, evaluated genetic data-sharing guidelines in research, considered the relevance of return of research results for recruitment and enrollment, analyzed private payers’ coverage policies for genetic testing, examined challenges to financing long-term care, identified policy needs within the criminal justice system in managing and caring for older adults and characterized financial and legal decision-making in young-onset dementias.