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ASB 2024 Workshop Round-up: Re-examining "the way things have always been done" Part 1

11/1/2024 11:59 am

This blog is the first in a series based on a workshop given at ASB 2024 by Drs. Frankie Wade, Kayla Seymore, and Alexa Johnson. 

 

As scientists, we must be aware the harm that has been perpetrated by our predecessors so that we can be and do better towards improved global health. To begin, lets define “diverse populations” as we’ll be using it. In short, a member of a diverse population is any person who is not part of the “ruling class”. Historically, in scientific research, this has meant college-aged cisgender White males. Indeed, it was not until the Revitalization Act of 1993 that scientists were mandated to include “minorities and women” in NIH-funded research. Even this constituted a minimal commitment to reversing the status quo, as diversity expands beyond race, ethnicity, and sex. (In part 2 of this series, we’ll discuss the issues and needs of sex and gender, and the consideration of intersectional identities (the combination of multiple identities that compound to alter a person’s experience) in research.)

 

And, despite a mandate for inclusion of women and minorities in research for 3 decades, a report of FDA-sponsored clinical trials for new drugs reported that even now, 75% of participants were White. There is no single solution to diversifying research, and dismantling institutionalized systems that have perpetuated homogenous research participation takes time.  But we are stronger, both as a community and as scientists, when we consider ALL people, not just the “ruling class”. So, how do we increase diversity in our research?

 

Figure 1: Road map for community-based clinical trial research

 

As biomechanists, we like data. Let's take a look at some. A patient survey revealed a 3-phase approach for effectively increasing diversity. This approach prioritizes integrating with a community before, during, and after the research study. In the survey of 176 participants in health-related studies, the important strategies included increasing compensation, reducing barriers to access (e.g., childcare services, transportation services) and increasing awareness of research (e.g., partnering with trusted messengers in the community, participating in community events, organizations, and educational programs). Non-White participants were exposed to research studies through social media and community members, while non-White participants preferred to discuss study participation with a community member at much higher rates than White participants (Figure 2). Thus, establishing community relationships is critical to increasing diverse participation in our research.

 

Figure 2: Data from EY-Parthenon survey

 

Community building is important.

When working within the community, it is critical to do so with cultural awareness and humility. This means that all research team members should be aware of any special practices, ethical considerations, spiritual and religious rules, and use appropriate language. Further, do not rely on stereotypes. Here are some guidelines:

  1. Relationships should be reciprocal – you should give as much as you take. This might look like volunteering your time and resources or investing financially in community events.
  2. Think about how you can help first. Be present at local events, be open to learning, lead with respect and openness, and be an ally to that community. If your team is composed of mostly or all White individuals, and the community you are reaching out to is not, there is the risk that a lack of cultural competency can result in researchers increasing their bias through a perception of themselves as "White saviors." To avoid this negative outcome, make sure you follow the lead of community members regarding their norms and requests.
  3. Learn the landscape of the community – What is important to this community? What is celebrated? What challenges exist? Are there any unwritten rules?
  4. Provide a menu of ways for the community to work with you. This might look like opening your lab to community tours, conducting focus groups (and work with those who specialize in these), outreach days like National Biomechanics Day, helping to develop study materials (such as partnering with a local graphic designer), and more.
  5. If you conduct focus groups, make sure you listen to the folks who take time to talk with you. Listen, and learn. Incorporate their suggestions wherever feasible.
  6. Partner with minority-serving institutions and invest in their structures. Anywhere you want to partner, you should invest – whether that is finances, time, resources, or other ways.
  7. Show up with money – this shows you are serious about the partnership and can grease wheels. Consider writing this into grants or seeking out local/national funding opportunities to support the development of relationships between the community and institution.
  8. Consider the cultural competency of your research team. Is the population you’re serving reflected in your team? If so, listen to their suggestions and provide training in cultural competency to other members. Often your students may be members of the community groups you are looking to partner with. Reach out to your students and listen to their expertise.
  9. Increase your lead-in time. You should consider trust building far in advance of when you want to conduct research with a community population.
  10. Bring results back to the community. Once partnered, communicate findings and how their involvement led to advancements. How can you link your research back to benefit the community?
  11. Definitions of research can be misunderstood. Work with trusted community leaders to increase awareness. Indeed, connecting with a community leader can be the most important piece to building community partnerships. 

These strategies can be summarized by the acronym: LOC-IN. Listen, Organize, Commit with Intention and Nuance (Figure 3).

 

LISTEN:

  1. Join your community through fairs, farmer’s markets, local exercise clubs, etc.
  2. Become part of the local community to understand the landscape better and reach out to those that are regularly connected to community members (e.g., nurses, physical therapists, coaches).
  3. Identify community leaders and introduce yourself.

 

ORGANIZE:

  1. Become involved in existing community events to show the friendly faces of scientists.
  2. Become an advocate for health and wellness and leverage any existing institutional resources; these may exist outside of your department. Examples of existing community resources include community connectors at the University of Delaware and the BRIDGE program at the University of Virginia.
  3. Explain your research in general terms and focus on its benefits for the community. This is where community leaders can be vital in helping to explain your research. Incorporate research demonstrations into volunteer events (such as National Biomechanics Day).

 

COMMIT:

  1. Commit to consistent connection. It takes time to build trust in communities so ensure that you create a sustainable plan within your lab and institution.
  2. Remember that actions speak louder than words. Keep showing up in positive ways and that trust will begin to build.
  3. Give back to communities – summarize your research measures in easily consumable ways (such as infographics, bullet points, letters etc.) and translate your important study outcomes for the community. How do they relate to community health and wellbeing?

 

INTENTION and NUANCE:

  1. Remove barriers to engaging in research. This may mean altering your study hours to accommodate work and school schedules (i.e., before 9am, after 5pm, weekends).
  2. Ensure representation is at the forefront. Include a diverse team of researchers to facilitate familiarity and comfort for participants and ensure study materials are translated for non-English speakers. If interpreters are required, facilitate their provision.
  3. Representation expands to your study materials and marketing as well. You can create multiple versions of research flyers that reflect different community populations, ensuring representative images, multilingual ads, bullet points and layman’s terms. Further, you can use digital platforms to your advantage including videos of your research procedures and lab space to showcase the cool biomechanics work you do.
  4. Recruitment of participants can be facilitated by using key connectors in local communities to spread the word (e.g., pastors, teachers, coaches). Place study materials in specific community gathering spaces (in real life and online). Make use of participant registries (agency, institutional, or individual lab ones).
  5. Technology – ask and consider comfort and availability. Offer multiple approaches for communication (phone, text, email, letter), and consider formatting differences between phones, tablets, and computers.

One final note. While this is a nascent conversation in biomechanics, there are other disciplines where community-building is an established approach. Collaborate with researchers who have the expertise that you are missing. Qualitative researchers are vital when conducting focus groups and incorporating participant feedback into research. Public Health researchers often are experts in building trust in communities who have strong mistrust of science and research. Reach out and ask for help! Remember that change happens iteratively and it is important to learn from our mistakes.

 

Figure 3.

 

The authors would like to acknowledge the following people for their contributions to this content: Nancy Nguyen (PhD student), University of Delaware; Fany Alvarado Hernandez (PhD student), University of Delaware; Mario Garcia (PhD student), University of Virginia; Evan Dooley (PhD), Exponent.

Authors

Dr. Frankie Wade (she/her/hers) is an Assistant Professor of Biomechanics at San Diego State University. She leads the Ally Corner as part of the Black Biomechanics Association and has a strong commitment to making our field equitable and accessible.

 

Dr. Kayla Seymore (she/her/hers) recently graduated with her PhD in Biomechanics and Movement Science where her work focused on the impact of lower limb musculoskeletal adaptations on Achilles tendon health and development in adolescents. She currently leads the Black Biomechanists Association, a non-profit organization she co-founded with the mission to uplift and enrich Black biomechanists in their academic and professional careers.