Community Engagement Program

Supporting Participants to Achieve Equity in Research

The Community Coalition for Equity in Research creates tools and materials for researchers to help address common issues identified during the study review process. This guide offers best practices for addressing inequity in research studies by integrating social and/or emotional supports for research participants.

Why Does This Matter?

Historically, research has not included diverse study participants. Underserved communities are not often presented with equitable opportunities for research participation. For example, lack of access to childcare, transportation, housing, and food may stop people from participating in research. Language barriers only add to this challenge. Depending on the study topic, emotional and mental health support may also be necessary. While it is not the researchers’ responsibility to address all these issues fully, connecting study participants to resources of support conveys a clear message that participants are respected for who they are and not simply as a means to conduct research.  Demonstrating thoughtfulness and respect may promote further interest in research and collaboration between researchers and community members.

Action Steps for Including Resources to Support Research Participants

Think about:

• Your study: Does it require transportation? Extensive time commitment? Childcare? Translation services?
• The wellbeing of your participants: Will they need emotional or community support before, during, or after participating in your study?

Connect with:

• Leaders who can speak to barriers their community has faced when participating in research. Talk to them about the potential impact of your research and its relevance to their community.
• Community organizations and agencies to identify resources and support services that may already exist for potential research participants.
• Local vendors and community spaces to increase participant comfort and access.

Share out:

• Create a list of supports for study participants that suits your recruitment population. You can use this list of Boston-area resources/organizations  as a starting point or go to FindHelp.org to find resources based on your location.
• Include this information in your recruitment and consent materials and continue to share it throughout the study.
• Tailor the dissemination of these resources to your audience. For example, not everyone will be able to access a website. Instead, create handouts in multiple languages.
• Train study staff to review and connect resources with participants.

Tips for Providing Support to Research Participants

• Use plain language in all content and explain terms where needed. We recommend using this plain language checklist for your materials.
• Make content available in the languages best suited for your audience. We recommend these local and certified translation and interpretation services for your materials.
• Build budgets that provide equitable resources for community partners working on research projects and ensure inclusive recruitment of diverse research participants. We recommend these practices for building equitable budgets in research.

Example: Our coalition suggested that participants in a study focused on developing healthy mental habits through a mobile app may be searching for a therapist or need other mental health support. This research team created an annotated list of free and accessible mental health resources for their participants.

Other Resources and Reading

• Why Diverse Clinical Trial Participation Matters: This article from NEJM offers perspective on how to increase diversity in research participation by encouraging researchers to address common problems people face.
• Overcoming Transportation Barriers to Trial Participation: This research article studied the impact of providing transportation for research appointments. A key result was that research participants responded positively to the service. Offering transportation could further improve participation retention in studies.
• Participant and Patient Engagement, Recruitment, and Retention: The section, “participant retention strategies”, in this guide by Duke University gives actionable steps to get people interested in a research study.

Review Your Study With Us

The Community Coalition for Equity in Research serves as a free resource for high- quality community input on research proposals and protocols, as well as a trusted communication channel between researchers and community stakeholders.

Please email community@catalyst.harvard.edu if you are interested in having your research study reviewed by our coalition members.

 View PDF of the above information.