NIH studies lacking in community engagement
NIH studies lacking in community engagement
Survey shows less than half report involvement
As institutions involved in the Clinical and Translational Science Awards program examine how to best incorporate the CTSA's "community engagement" requirement, one CTSA recipient took a hard look at its community involvement practices.
Researchers at Ohio State University who received funding from the National Institutes of Health (which also funds the CTSA) were surveyed about the types of community engagement activities they employed in their studies.
Results showed that fewer than half of NIH-funded studies reported any community engagement. Methods that require more collaboration with the community, such as advisory boards, were particularly uncommon.
Nancy Hood, MPH, who at the time of the survey was community engagement program manager for the OSU Center for Clinical and Translational Science in Columbus, says the goal of the survey was to establish a baseline for community engagement in NIH research.
"We made a specific decision to focus on NIH-funded research, because the CTSAs are NIH-funded," Hood says, noting that community engagement activity would have been much higher had other types of research been included. "We know generally that more community-engaged research is done outside of NIH-funded research."
She believes OSU's results are fairly representative of those of other institutions.
"I don't think we're particularly ahead of or behind the curve," Hood says.
Levels of engagement
Hood's group conducted an online survey of principal investigators for studies whose NIH grants were active beginning in January 2004 and which had been completed by December 2008.
"We wanted studies that were complete, so people were telling us what they did, not what they planned to do," she says.
Surveys were completed for 122 studies. Of that number, 52, or 43%, reported some type of community engagement:
- 21 studies (17.2%) reported either working with an advisory board or committee of community representatives or taking some other action to get input from community representatives during the study. These were described as "Level 1" activities, consistent with the principles of community-based participatory research (CBPR), which calls for a collaborative, equitable partnership between researchers and the communities they study.
- 48 studies (39.3%) reported "Level 2" activities those that didn't require significant collaboration with the community but still could provide community input. The most common Level 2 activities reported were conducting data collection somewhere other than the main campus and disseminating research results to community representatives.
Other Level 2 activities included conducting focus groups, developing a memorandum of understanding or agreement with an outside community group and holding special events or recognition for study participants.
Hood says that while she had expected slightly higher numbers for community engagement activities, the results reflect the conversation that institutions are having about community engagement in NIH studies, which can look very different from the classic CBPR more commonly seen in public health or environmental health research.
"That was one of the purposes of this study, to call attention to the fact that in the more clinical-type research that NIH is funding there's less of this going on," she says. "And I think we are being critical about what exactly does community engagement look like in clinical research? Does it have to be CBPR or can it be things like service learning and community service and those sorts of things?"
"It's OK if the answer is it's a little bit different from the CBPR model," Hood says. "We just have to keep asking the questions."
Improving the survey
Hood says she hopes future surveys will give respondents more varied examples of community engagement to report, since this survey may have missed some types of community involvement currently in use.
"Do investigators give presentations about their work – if their area of research is diabetes, do they go and give presentations about diabetes in the community?" she says. "Do they engage their students in service learning around the research that they're doing? I think that could definitely broaden the scope of how we're defining community engagement in research."
Hood also expects that future surveys will ask about non-NIH funded research.
"At our university and others, there's a lot of other community-engaged research going on that's not NIH funded and I don't want to short-change that," Hood says. "We want to document that piece as well. It's harder to define your sample when you go outside (NIH funding) because there are so many different funding sources and so many different colleges."
She says IRBs can play a key role in facilitating community-engaged research:
- By fully integrating their own community members into reviews;
- By approving appropriate training for community partners who participate in data collection. Hood says often the usual human research protection training doesn't work for community partners.
"In the typical training that we have here for investigators, the language really isn't appropriate," she says. "There are a couple of excellent online training curricula that I've seen, and I'm eager to look for opportunities to test those training materials. That's something that IRBs will have to address, because it has to be an approved curriculum."
- By understanding the different route that community engaged research can sometimes take.
"Sometimes you can't say exactly at the beginning how the process will evolve, which is different from the typical research process that IRBs are often set up to review and approve."
Reference
Hood NE, et al. Survey of Community Engagement in NIH-Funded Research. Clin Trans Sci. 2010; 3:19–22 .
As institutions involved in the Clinical and Translational Science Awards program examine how to best incorporate the CTSA's "community engagement" requirement, one CTSA recipient took a hard look at its community involvement practices.Subscribe Now for Access
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