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. 2023 Aug 2;11:1211520. doi: 10.3389/fpubh.2023.1211520

Table 2.

Barriers and strategies to visible minority participation in musculoskeletal research.

Theme Barriers Strategies
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)
  • Low health literacy, lack of access to scientific information, misconceptions and/or lack of understanding of what research entails

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)
  • Mistrust amplified when English was not first language of participant

  • Difficulty reading recruitment materials

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)
  • Intimidated by informed consent, burdensome forms

  • Confidentiality concerns

Invasive procedures and screening processes (3 articles) (36, 46, 51)
  • e.g., screening procedures, fear or inconvenience of giving biological materials like blood and urine (related to mistrust)

Lack of support (from family and community) (2 articles) (38, 44)
  • Lack of community support and exclusion of family members/support system in enrolment

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)
  • Bilingual research staff, employing bilingual advisors and using translated recruitment materials and research instruments

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)
  • Encouraging patient to consult community representatives and family members before consenting

  • Option to bring a person of their choice to data collection

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)
  • Concise, positive tone, clear lay language, potentially bilingual

Creating appropriate consent forms (2 articles) (39, 40)
  • Straightforward and transparent consent forms provided to subjects in English and/or native language along with verbal explanations

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)
  • Ensuring flexibility in scheduling and locations and provision of accommodations/reimbursements to reduce logistical barriers

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)
  • Education or training interventions that are provider focused, partnership-based and patient-meditated

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)
  • Lack of communication of research findings to participants or treating physicians

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)
  • Thoughtful design of eligibility criteria to recognize ethnocultural complexities to prevent exclusion of visible minorities

Meaningful engagement throughout all or important stages of research design (4 articles) (34, 39, 50, 52)
  • Partnerships with local patient advocacy groups

  • Engaging community partners at all stages of research design for input

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)
  • Applying cultural and linguistic competence to research and in all steps of the research process, creating culturally tailored programs

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