| Participant willingness |
Mistrust and fear of exploitation due to historical mistreatment of minorities in research (12 articles) (25, 32, 35–37, 39, 44, 46, 49–52) Lack of awareness or understanding about research (n = 11) (25, 26, 28, 35–38, 41, 44, 50, 52) Lack of personal benefit (7 articles) (26, 35, 36, 44, 45, 49, 51)
Skepticism of treatment efficacy, possibility of receiving placebo, low expectations of benefits
Program/treatment may not resonate with participants, disinterest in study
Requirement to stop other treatments
Disappointment from research outcomes (ineligibility, withdrawal, sparse feedback, do not capture lived experience)
Language barriers (5 articles) (28, 37, 44, 45, 52) Fear of unknown side effects and risks (5 articles) (26, 35, 36, 39, 46) Stigma around disease or research from support system (4 articles) (25, 38, 43, 46) Informed consent and confidentiality (4 articles) (26, 37, 38, 52) Invasive procedures and screening processes (3 articles) (36, 46, 51) Lack of support (from family and community) (2 articles) (38, 44)
|
Ensuring benefit to participants (9 articles) (26, 29, 35–37, 43, 45, 46, 52)
Emphasizing potential for improved health, emphasizing altruistic benefits during recruitment and throughout study
Compensation (transport, childcare costs, monetary payments)
Access to thorough and free care like physician visits, tests, complementary screening for musculoskeletal conditions
Tailoring interventions and/or programs to accommodate different functional abilities and cultures
Offering opportunities for social support with peers with similar conditions
Overcoming language barriers (6 articles) (29, 37, 40, 45, 47, 48) Developing networks with community leaders in visible minority communities (5 articles) (e.g., clergy, senior centers, service organizations) (35, 40, 42, 50, 52)
Forming relationships in communities with visible minorities through visits to sites, community talks, and easy phone access
Encouraging visibility and involvement in community activities beyond research to optimize trust
Reducing mistrust through communication (4 articles) (26, 31, 46, 50)
Frequent communication between contact and participants (including follow up feedback)
Building trusting relationships between participants and their communities, and culturally competent staff
Be cognizant of discomfort during study
Participate in community events to make research institutions accessible and familiar to minorities
Engaging meaningfully throughout all or important stages of research design (4 articles) (34, 39, 50, 52)
Receiving input from intended audience
Partnerships with local patient advocacy groups
Engaging community partners at all stages of research design
Educating participants (4 articles) (37, 41, 46, 52)
Participant education about research opportunities and expectations (especially those who do not speak English natively)
Community and faith-based participatory research approaches, providing practical information and educational sessions
Engaging patient support systems (3 articles) (28, 39, 50) Training research staff (3 articles) (29, 31, 52)
Address and avoid implicit biases in participant engagement, outreach and recruitment of minorities
Applying cultural and linguistic competence to all steps of the research process, creating culturally tailored programs
Using clear and culturally relevant recruitment materials (3 articles) (31, 42, 48) Creating appropriate consent forms (2 articles) (39, 40) Providing flexibility in data collection (2 articles) (37, 52) Personalization in frequency and method of data collection Improving racial concordance among participants and researchers / having a diverse research team (2 articles) (25, 39) Identifying and recruiting patient ambassadors to serve as gatekeepers (1 article) (39) |
| Participant opportunity |
Logistical barriers (e.g., location, transportation, time, childcare, financial concerns) (10 articles) (25, 26, 31, 32, 36, 38, 39, 44, 45, 51)
Competing demands (e.g., childcare, work)
Location of trial site (e.g., lack of access to site, lack of trials within proximity of provider, safety of location)
Lack of referrals from primary care physician (6 articles) (25, 37, 39, 42, 44, 52) Limited access to healthcare or specialists (3 articles) (37, 42, 44) |
Recruiting in communities/locations that predominantly serve races of interest (11 articles) (eg. Senior housing, community clinics) † (27, 29, 30, 33–35, 42, 45, 47, 48, 51)
Direct mailing or use of mailing lists
Active recruitment, community outreach, community talks
Word of mouth or specifically inviting participants to refer a friend/family member that meets criteria
Recruiting through community-based physicians or physicians that predominately serve visible minorities
Contacting participants from related studies, prior studies, pre-existing social networks
Advertising through newspapers with predominantly minority audiences
Improving logistics for access to research (7 articles) (26, 31, 40, 45–47, 51) Increasing awareness to potential participants (4 articles) (37, 41, 46, 52)
Educating potential participants about research opportunities and expectations (especially those who do not speak English natively)
Community and faith-based participatory research approaches, providing practical information and educational sessions
Creating positive relationships between patients and providers (4 articles) (25, 39, 49, 50)
Shared decision-making, positivity, and friendliness in patient-provider relationship.
Building trust in patient-physician relationships and acknowledge unconscious biases/structural racism
Training healthcare providers to provide referrals (3 articles) (25, 44, 52) Providing flexibility in data collection (2 articles) (37, 52)
Offering personalization of data collection (in frequency, method), ensure data collection is convenient
Collecting data on participant race and/or ethnicity
|
| Research design |
Eligibility criteria (e.g., due to comorbidities) disproportionately exclude visible minorities (4 articles) (32, 35, 47, 52) Lack of connections to community (2 articles) (26, 52) Implicit biases of researchers (2 articles) (44, 52) |
Developing personal contact with community leaders within visible minority communities (e.g., clergy, senior centers, service organizations) (5 articles) (35, 40, 42, 50, 52)
Forming relationships in communities with visible minorities through visits, community talks, and phone access
Assistance from community gatekeepers in implementation and rollout of recruitment to ensure concordance
Encouraging visibility and involvement in community activities beyond research to optimize trust
Eligibility criteria (4 articles) (28, 32, 39, 51) Meaningful engagement throughout all or important stages of research design (4 articles) (34, 39, 50, 52) Reducing mistrust through communication (4 articles) (26, 31, 46, 50)
Frequent two-way communication with participants and provider and incorporation of post-study feedback
Building relationships between participants and their communities, to encourage familiarity and accessibility to visible minorities
Training research staff to engage with participants without introducing biases during study and in recruitment (3 articles) (29, 31, 52) Identifying and recruiting patient ambassadors to serve as gatekeepers (1 article) (39) |
| Healthcare provider |
Lack of referrals/support from primary care physician (6 articles) (25, 37, 39, 42, 44, 52)
Implicit bias of referring physicians and fear of potentially losing patients
Lack of understanding of the research process (e.g., referral letters may be associated with coercion)
|
Creating positive relationships between patients and providers (4 articles) (25, 39, 49, 50)
Shared decision-making, positivity, and friendliness in patient-provider relationship.
Building trust in patient-physician relationships and acknowledge unconscious biases/structural racism
Training research staff (3 articles) (25, 44, 52)
Understanding and addressing personal, institutional and implicit biases through training (i.e., site initiation training)
Education or training interventions that are provider focused, partnership-based and patient-mediated
|