Christina Getrich , PhD Andrew Sussman , PhD, MCRP

1. Community Voice in Strategies for Recruiting and Retaining Navajo Community Members in Primary Care Research Christina Getrich, PhD Andrew Sussman, PhD, MCRP Navajo Nation HRRB Conference 11/16/11

2. Problem • The underrepresentation of diverse populations in research an important barrier to: • Understanding differences between groups • Developing culturally appropriate health services and interventions • Conducting research through primary care settings based in the community offers the potential to address these problems

3. Our Study • We did a study on the Navajo Nation to identify strategies for involving community members in projects led through primary care • Researchers need more understanding about developing culturally sensitive procedures for recruitment and retention that address the concerns of Navajo persons

4. Who We Are: RIOS Net • NM’s primary care, practice-based research network (PBRN) • A group of 200+ clinicians serving low-income, medically underserved, and culturally diverse communities • Focused on health disparities

5. RIOS Net Research Areas • Diabetes/Obesity • Tobacco Use • Alcohol Use • Traditional, Complementary, and Alternative Medicine • Hepatitis C • Family Violence • Depression • Cancer prevention • Barriers to health care access

6. Methods: Focus Groups • We conducted 3 focus group discussions with members of 2 different Navajo communities • Focused on: prior experience with research, influences on initial participation, influences on continued participation, role of doctors/staff, recommendations for researchers • Focus groups conducted between November-December 2010 • All focus groups had bilingual (Navajo-English) co-facilitators

7. FG Participant Demographics • 27 focus group participants overall • Gender • Men = 9 (33%) • Women = 18 (67%) • Age • 30s = 2 (7%) • 40s = 3 (11%) • 50s = 9 (33%) • 60s = 6 (22%) • 70s+ = 7 (26%) • Preferred language • Only English = 1 (4%) • Only Navajo = 6 (22%) • Both =20 (74%) • Research experience • Yes = 5 (19%) • No = 19 (70%) • Don’t know = 3 (11%)

8. Results • We found that community members are generally receptive to involvement in research conducted through primary care settings • This participation is contingent, however, on meeting a set of conditions • We grouped these conditions into categories: • I. Building a foundation of trust • II. Views of research participation • III. Views of physician/ staff roles in projects • IV. Tailored recruitment strategies • V. Tailored retention strategies

9. I. Building a Foundation of Trust • Participants advocated that researchers build trust with community partners before study implementation • Building relationships • “If someone were to come out into the community… and we didn’t know them, but they wanted to ask us some questions, we probably wouldn’t be able to be open to them, because…we’d be unsure of them.” • Being upfront about the research • “I would suggest that to make it more clear for everyone, to really understand, to really know what this research is about.”

10. II. Views of Research Participation • Participants reflected on their associations with research • Negative views • Concerns about being like a “guinea pig” or “lab rat” • Positive views • “It’s not bad thing to participate. Then you talk to your people about it…‘Hey, I went over there and would talk about this and this.’ It might help.” • Motivation • “We really do want to learn [about] our health, especially if we have problems. We want to understand ourselves what’s the situation we are in.”

11. III. Views of Physician/ Staff Roles in Projects • Less research on issues related to conducting research in primary care • Participants expressed mixed feelings about physician involvement • “It depends on your doctor. Some you feel good talking to them…[they’re] down to earth with you. Then there’s others that…kind of put you down, you know just the way they talk. They try to be nice, but you can tell.” • Concern about it causing fear

12. IV. Tailored Recruitment Strategies • Participants recommended appropriate ways to reach out to people in the first place • Work through Chapter Houses • “Have a group like this group and then talk about it [so people can] find out more information on it and also what it’s for.” • Radio • Word of mouth • Importance of clear communication • Researchers [need to] be specific, not with the high expensive words, but come down to our level. Maybe [have] a good translator [since] a lot of us Navajos would really understand someone in the Navajo language [to] talk about basically what the problem is.”

13. V. Tailored Retention Strategies • Participants also reflected on what would keep them engaged in research studies • Convenience • “Keep the research close nearby, like the Chapter House. If we’ve got to travel far distance then I don’t have the time to do all that. Like I said, I take care of livestock. I take care of my nieces and nephews when they come back from school.” • Ongoing communication – feedback • Getting people involved • “To keep [people] coming, I would say involve the group. Give out what research can be gathered out there in the community so they can bring that information and talk about it whatever topic is going to be on class health on that day again. That way they’d come back.”

14. Closing the Loop • Returning results • “We put all this time in and we don’t get any feedback … you don’t tell us about all the information you gathered, so what was the purpose? I’d like to get some feedback, some results, what you learned from the project.” • Helping solve problems • “Other researchers come and go. Poke their head in, then it’s over and they never come back to give us the results. They never come back to help people solve the problem. Did it work? Is there a better understanding?” • Bringing attention to issues more widely (i.e., to the university, the government)

15. CYCLE OF RESEARCH Before the Study During Recruitment Throughout Study Conduct Following Study Completion

16. Conclusions • Researchers will need to incorporate culturally appropriate components from each of these categories in the development, implementation, and dissemination phases of research projects • Community-based participatory research principles offer a general approach to create and maintain these conditions

17. Benefits of Research • These findings will help guide researchers in culturally appropriate recruitment and retention strategies for involving Navajo participants in primary care-based research studies • These findings will help RIOS Net develop future projects that aimed at doing something about health concerns people in the community have

18. THANK YOU!!! Christina Getrich chgetrich@salud.unm.edu 505-272-3489