The Diversity Deficit: Prioritizing the community's voice to overcome disparities with community-engaged research
Clinical trial accrual is rarely representative of the diverse makeup of any given community. When the science isn't reflective of the needs of all populations, those facing disparities see inequities in cancer care advancements.
The Diversity Dividend
When underrepresented populations are engaged in clinical research, advancements are experienced more equitably and the field of cancer care is advanced.
5 best practices for community-engaged trials
DEFINE THE COMMUNITY
A community is a group of people connected socially with common perspectives and engaged in shared action within a particular setting.
4 Community Perspectives:
- Individual
- Virtual
- Social
- Systems
5 Community Core Elements:
- Locus
- Sharing
- Joint action
- Social ties
- Diversity
IDENTIFY AND SELECT COMMUNITY PARTNERS
One person cannot represent an entire group, and one organization cannot represent an entire community.
Step 1: Identify intent and need.
Step 2: Identify potential partners.
Step 3: Consider potential roles.
Step 4: Identify key criteria.
Step 5: Select the core partners.
Step 6: Add more partners.
An effective partner:
Is willing and committed to the partnership goals.
Values community-engaged research.
Is trustworthy.
Has a deep and rich history with the community.
Is competent.
Is committed to meeting the needs of the community.
Is knowledgeable.
Has the appropriate skills.
Has a connection to the community.
Cares for the community.
Is committed to the partnership process.
IDENTIFY THE LEVEL OF COMMUNITY ENGAGEMENT
Different levels of engagement might be appropriate and meaningful at any level, so long as the priorities of the community are at the center.
LOW ENGAGEMENT
potential for imbalance in the decision-making process
- Information
- Consultation
- Involvement
- Collaboration
- Co-leadership
HIGH ENGAGEMENT
more likely to integrate community priorities
PAY ATTENTION TO PARTNERSHIP DYNAMICS
Authentic partnerships for community-engaged research can reflect important cultural contexts, ultimately impacting research and improving health equity. Attention to partnership dynamics empowers the community toward a shared health vision.
Individual Partner Characteristics
+
Partnership Structures
+
Relationships
=
Shared Commitment to Collective Empowerment Promoting Shared Equity Goals
DEVELOP RELATIONSHIPS, INCLUSIVE ENGAGEMENT AND DEEP COMMUNITY KNOWLEDGE
Inclusive engagement requires intentional, consistent actions that over time lead to deepened relationships with the community.
COMMUNITY
The organization needs to be open and willing to share information – both about the organization and about the data collected from the community.
ORGANIZATION
“Through careful deliberation and involvement with community partners, researchers can develop tailored blueprints for clinical trials that can ensure that our science reflects the needs of all populations.”
Folakemi T. Odedina, Ph.D.
Deputy Director for Community Outreach and Engagement at Mayo Clinic Comprehensive Cancer Center
Organizational Change
While organizational change can be difficult, it is necessary when deciding to focus on inclusive engagement. Once an organization decides to increase trial diversity in this way, these steps can support the process:
- Commit to a relationship with the community rather than episodic interactions
- Provide a welcoming environment within the community and the organization
- Commit to increasing accessibility across all spectrums of care
- Formalize partnerships with diverse organizations and agencies that have strong connections with the community or provide services to the community
- Provide opportunity for input and feedback from the community for continuous improvement
Focused engagement across clinical trials
ADDRESS CLINICAL TRIAL BARRIERS USING KEY FACILITATORS
Personal-level barriers include trust issues, lack of awareness and knowledge of clinical trials, and cultural and language barriers.
Facilitators include altruism and perceived benefit.
Practice-level barriers include limited time spent with patients of minority groups, lack of diversity in the healthcare workforce, researcher and physician biases that patients of minority groups are hard to reach, and less discussion of enrollment with patients of minority groups, as well as not taking the time to develop a relationship that fosters trust.
Facilitators include attitude of the research team and relationship with the priority population.
System-level barriers include access to care, lack of cultural sensitivity in healthcare delivery and past unethical medical experimentation.
Facilitators include access to care and free treatment.
Protocol-level barriers include research design issues, complexity of informed consent, and rigid inclusion or exclusion criteria.
Facilitators include study duration and a simplified informed consent process.
IDENTIFY AND DEVELOP TAILORED CLINICAL TRIALS
Increasing the diversity of stakeholders – health professionals, the research team and trial participants – expands the scope of the trial and helps establish trust within the community. Identifying and creating diverse trials in design and structure, rather than simply educating diverse audiences about trials, encourages representation more effectively.
CONSIDER PARTICIPATION DIVERSITY IN THE TRIAL DESIGN
Barriers in the clinical trial design often lead to poor representation of marginalized communities. The population most likely to be affected by the data must be represented, and the design should leverage the expertise of the community.
COMMIT TO BRIDGING THE GAP BETWEEN RESEARCH AND PRACTICE
Strategies to connect innovations and discoveries with the community should include culturally appropriate consideration of clinically relevant populations, intrinsic factors and extrinsic factors.
USE STRATEGIES TO RECRUIT UNDERREPRESENTED POPULATIONS
The FDA has issued the following draft guidance to improve clinical trial diversity:
- Make trial participation less burdensome for participants.
- Offer trial participants appropriate financial reimbursement.
- Adopt enrollment and retention practices to enhance inclusiveness by fostering community engagement.
- Consider diversity in the selection of practitioners and coordinators.
- Sponsor recruitment events during weekend and evening hours.
- Avoid unjustified exclusions and promote inclusion.
- Use enrichment strategies and enrichment-based selection.
- Involve patient advocates, patients and caregivers.
- Provide trial resources in multiple languages, and engage a multilingual team.
- Make open-label extension studies with broader inclusion criteria.
Take the next steps toward community-engaged research
- Develop an inclusive research recruitment strategy before initiating studies.
- Implement policies that engage community-based partners to improve access.
- Integrate engaged research approaches early in the trial conception.
- Support the infrastructure needed to change processes that shape existing inequities.
Online Referrals
You can refer patients to Mayo Clinic securely online with the CareLink referral portal at CareLink.MayoClinic.org. To refer over the phone, contact your Mayo Clinic location.
- Phoenix/Scottsdale, Arizona
866-629-6362
- Rochester, Minnesota
800-533-1564
- Jacksonville, Florida
800-634-1417
Connect With Us
To receive more resources like this directly to your email inbox, register for the Mayo Clinic Cancer Physician Update. Visit MayoClinic.org/cancernews to learn more.
For more information:
- Odedina FT, et al. Community engagement strategies for underrepresented racial and ethnic populations. Mayo Clinic Proceedings. 2024;99:159.