UAMS seeks to share more medical research with participants

The University of Arkansas Medical Sciences (UAMS) said this week it is trying to change information sharing procedures from medical and health research with the participants of the studies. The Little Rock-based medical provider said more than $180 billion is spent annually in the U.S. on medical and health research and thousands of people take part in the studies. However, most of the time the participants are not informed of the study results.

UAMS said three of its top administrators are national experts in the ethics, need and methods for returning survey result to participants. Pearl McElfish, vice chancellor at UAMS in Fayetteville, along with senior research director Chris Long and Rachel Purvis, assistant professor in the College of Medicine, found 90% of survey participants want to be informed of the results, but just 33% of them actually are, according to a 2016 study published in Clinical Trials Journal.

A new study conducted by the UAMS research team showed health researchers face several barriers to returning results, including financial barriers (lack of funding), systems barriers (lack of incentives or requirements to share results), skill-related barriers (lack of knowledge about how to share results with non-scientists) and ethical concerns (concerns that participants may misunderstand or misuse the results).

Over 80% of researchers reported each one of these barriers applied to at least some of the health research studies they have conducted, the release notes.

“Researchers generally express support for sharing results with participants,” Long said, “but in practice, they feel unprepared or unwilling to do so. Although the solution appears straightforward — just require federally funded researchers to offer the results to their participants — there are gaps in our knowledge that suggest a more deliberate approach might be better.”

To address the knowledge gaps, UAMS is testing the best methods for sharing results with participants and has established the UAMS Northwest Regional Campus as a nationally recognized research program in research dissemination. The research team believes public and private research funders can play an important role in ensuring participants receive research results from the studies they participate in, and they have recommended that funders consider ways to increase the sharing of results beyond scientific journals and conferences.

For example, funders could require results-sharing plans as part of researchers’ applications for funding, and they could require that a portion of grant funds be used specifically to share results with lay audiences and participants. McElfish said funders also would need to increase grantees’ skills and comfort with sharing results more broadly. For instance, funders could provide tools and training, such as webinars with science communication experts, which would support grantees’ efforts to share results with participants.

The research team’s new study can be found online. Additional studies are currently underway as well.