Cultivating a Cycle of Trust With Diverse Communities in Practice-Based Research: A Report From PRIME Net

Christina M. Getrich; Andrew L. Sussman; Kimberly Campbell-Voytal; Janice Y. Tsoh; Robert L. Williams; Anthony E. Brown; Michael B. Potter; William Spears; Nancy Weller; John Pascoe; Kendra Schwartz; Anne Victoria Neale

doi:10.1370/afm.1543

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Figure 1
The cycle of trust.

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Table 1
Key Informants, by Predominant Research Perspective
Predominant Research Perspective Number Years of Experience, Median
Academic 10 20
Clinical/practice-based research network 8 20
Community agency/nonprofit 6 15.5

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Table 2

Focus Group Participants, by Racial/Ethnic Group

Racial/Ethnic Group	Nos. of Groups (Participants)	English Preferred, % (No.)	US Nationality, % (No.)	Time Living in US,^a Median (SD), y	Women, % (No.)	Age, Median (Range), y	Education, High School or More, % (No.)	Experienced in Research, % (No.)
African American	3 (30)	100 (30)	100 (30)	NA	63 (17)	51 (26–66)	90 (27)	10 (3)
Arab/Chaldean	4 (36)	25 (9)	22 (8)	16 (9.8)	50 (18)	42 (19–84)	53 (19)	11 (4)
Chinese	5 (47)	11 (5)	10 (5)	14.5 (9.1)	66 (31)	58 (22–84)	49 (23)	32 (15)
Hispanic	3 (22)	36 (8)	68 (15)	32 (14.7)	68 (15)	53 (31–75)	23 (5)	9 (2)
Navajo	3 (27)	7 (2)	100 (27)	NA	66 (18)	58 (36–78)	NC^b	18 (5)

NA=not applicable; NC=not collected.
↵a Reported only for foreign-born participants.
↵b Data not collected out of respect for participant concerns.

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Table 3

Recommended Strategies for Recruiting and Retaining Diverse Communities in Research

Views/Strategy	African Americans (SOAR-Net)	Arab Americans (MetroNet)	Chinese Americans (SF Bay CRN)	Hispanic Americans (SPUR-Net)	Navajo (RIOS Net)
General Views of Research Participation	Implicit distrust in research enterprise High level of suspicion in “the system” Sense that research hasn’t been beneficial	Desire to learn is a potent motivator Recognition of value of prevention—supports research involvement	Perceive benefits in gaining knowledge and advancing science Some fear and uncertainty, and concern about scams	Generally positive connotation surrounding research Desire to help family members and future generations as motivators	Desires to learn about health topics and to help people and communities are motivators Concern about being mistreated as research participants
Strategy 1: Trust With Targeted Partners	Tuskegee study a legacy of distrust (of the government and health research) Importance of being honest up front and throughout projects	Suspicion of outsiders—need to establish trust Key community figures (doctors and religious leaders) influential in brokering trust	Credibility of the researcher and/or the research institution important Leverage trust through doctors or other authority figures	High level of trust in credible doctors and community clinics Fears about immigration status makes trust building essential	Initial distrust of researchers (historical legacy of abuse) Visit to communities is imperative to introduce researchers/projects and establish trust
Strategy 2: Relevant Topic and Feasible Study Design	The same general principles apply across groups: Community Focus projects on specific topics of relevance to community members (eg, diabetes, hypertension) Consider community members’ motivations for research participation (eg, desire to learn, advance science, help one’s family) Make research participation accessible and convenient to a wide spectrum of community members Clinical Ensure studies are of clinical importance Identify clinician allies and collaborate with them Clinicians with strong relationships with patients best suited to recruit Reduce the burden of participation for clinicians and clinical staff	…	…	…	…
Strategy 3: A Competent Research Team	Team members should be relatable people Transparency in communication is important—research team should be forthcoming with information	Knowing a community member on research team is helpful—people are not as open with strangers Language ability is important	Staff should not push too hard— people should be allowed to make their own decisions Staff professionalism is important for ensuring privacy	Recruiters must be fluent unless participants are acculturated Staff should have good and regular communication with participants	Breaching privacy was a concern when local community residents are part of research team Local research team member is ultimately held more responsible for the project than the PI
Strategy 4: Tailored Recruitment Strategies	Recruitment should be personalized Patient navigators can be used to adapt language in study materials and to successfully recruit families	Person-to-person/word-of-mouth recruitment preferred Sex concordance between recruiters and participants is important— husbands may have to give wives permission	Good bilingual marketing materials are essential Emphasize family values (highlight benefits of research to family and community) Tap into social networks (family and community)	Personal touch is important (ie, telephone calls from trusted organizations or contacts) Easier to recruit from within clinic than off the street (minimizes suspicion)	Oral communications are important—word of mouth or radio advertisements Pamphlets with pictures are useful Expectation that researchers participate in local events
Strategy 5: Study Implementation	The same general principles apply across groups: Buy-in of clinic staff can influence the success of the study Have a designated research person to contact when study-related problems arise Obtain feedback from clinic staff on study processes Keep clinicians in the loop (even if not actively part of project) Find out clinic’s approach to recontacting patients	…	…	…	…
Strategy 6: Tailored Retention Strategies	Important to maintain relationships with families (through personal calls) Participants need to see progress/change	Ongoing involvement of leaders is important in interventions Experiential learning and active participation help keep people engaged	Contact participants regularly and offer practical help Show participants appreciation and respect Staff continuity throughout project is important	Staff relationships with participants are important (need to have good and regular communication) Need alternative contact information (many migrate during year)	Projects may need to be adaptable to local events and instabilities Inquire about overall health— not just project focus
Strategy 7: Closing the Loop and Sowing the Seeds of Future Research Projects	Need to do continuous follow-up, including years beyond the end of the project Desire for the next generation to know about research results	Make sure results matter and benefit the community Attend festivals and religious celebrations Help community members access the university	Important to disseminate research results to maintain one’s reputation Have an end-of-study event to recognize clinical staff Highlight Chinese populations’ needs to the government	Desire for progress reports/regular updates Results need to be disseminated beyond the clinical setting	Help people improve their well-being—including beyond the end of the study Hold local meetings to present meaning of results Involve community members in dissemination of materials

SOAR-Net = Southwestern Ohio Ambulatory Research Network; SF Bay CRN = San Francisco Bay Collaborative Research Network; SPUR-Net = Southern Primary-care Urban Research Network; RIOS Net = Research Involving Outpatient Settings Network; PI = principal investigator.

The Article in Brief

Cultivating a Cycle of Trust With Diverse Communities in Practice-Based Research: A Report From PRIME Net

Christina M. Getrich , and colleagues

Background Minority populations are traditionally underrepresented in clinical research studies. In this study, researchers identified strategies for recruiting and retaining patients from diverse racial and ethnic communities into practice-based research studies.

What This Study Found Interviews with 18 researchers experienced in recruiting participants from minority communities and 172 patients from those communities revealed the critical importance of trust to successful recruitment and retention. Participants emphasized that establishing and maintaining trusting relationships that extend beyond the enrollment and data collection phases are essential to enhance the participation of diverse populations in clinical research in practice-based research networks. Participants identified a set of flexible strategies within each stage of the research process and called for close engagement with the clinic and community partners.

Implications

These findings provide guidance on culturally sensitive procedures for research recruitment and retention of diverse minority groups and offer practice-based research networks a guide for achieving this important goal.