Trust, Awareness and Access: The Three Keys to Sustaining Diversity in Clinical Trials
I recently had the privilege of attending and presenting at the inaugural SCRS Diversity Conference in Austin, TX. It was an incredible experience to be among industry thought leaders, sites, sponsors, CRO’s, and industry partners who diversely represented their professional and personal communities. I was deeply impacted to see the universal commitment to diversity efforts amongst all attendees. I quickly realized that a conference like this, centered on diversity, is not only beneficial, but highly necessary. The issue of lack of diversity in clinical trials still persists greatly to this day. In 2020, the FDA found that among 32,000 clinical trial participants 75% identified as white, and only 6%, 8%, and 11% identified as Asian, Black, or Hispanic respectively. This is an issue that affects us all – with lack of diversity in clinical trials, there is a lack of nuanced understanding of the treatments being tested. Diverse communities deserve to, and need to be represented in trials.
Some key takeaways from the conversations at the SCRS conference were that some of the largest barriers to overcome regarding lack of diversity in trials are: lack of trust, lack of awareness, and lack of access. These are no small barriers, however with an industry commitment, coupled with the proper solutions we can move the needle in the right direction.
Step One: Improving Clinical Trial Diversity by Increasing Trust and Awareness
Let’s start with building trust and awareness. One of the first principles in building trust within diverse communities is meeting patients where they are and building relationships that restore trust in communities that have been historically disenfranchised. The reality is, many communities distrust the healthcare system, let alone clinical research, and not without valid reason historically speaking. Breaking down the barrier of broken trust begins with getting out in front of the issue with impactful information that will reassure the patient that they can entrust themselves to the process. One of the largest ways our industry can do this is by understanding the impact that diversifying the workforce will have on the participant population. Espoused by people such as @Danielle Mitchell of Black Women in Clinical Research, it is imperative that sites employ individuals who understand the local cultural norms associated with the population that they serve. It’s proven to increase diversity in trial representation as proven by Tufts. Patients should feel represented by those in their own communities. We must address the unconscious and conscious bias about certain groups of patients.
Once trust is beginning to build up within communities, it is important to develop awareness of trials as well. This endeavor requires creativity and ingenuity. Just another benefit of partnering with those in the community in which you seek to make aware, is the fact that they know where to reach patients. Instead of using traditional methods, it is important to know where the patients are. Are they going to community centers, local churches, local businesses? Help patients become aware of trials by meeting them where it matters.
Step Two: Access & Removing Barriers to Encourage Broad Participation in Clinical Trials
The third and perhaps most critical barrier to increasing diversity is access. Much of the discussion at the SCRS Diversity conference centered around access. When we speak about diversity, it is easy to paint with a broad brush, however diversity by its very nature comes in all shapes and sizes: gender, race, sexul orientation, geographic and more. What does increasing access look like for a trial in a rural area? Offering transportation may be critical in allowing participants to continue their treatment. What might increasing accessibility look like in a pediatric study? It might look like providing resources for caregivers to be able to take the time needed to be present with a patient who is a child. When it comes to access, it often leads back to simple, yet critical financial and/or logistical burdens.
No eligible participant should be unable to participate in a clinical trial due to the fact that they can’t afford parking or transportation, or incur costs as a result of the trial that they can’t afford. New guidance provided by the FDA suggests that sponsors develop a plan, which may include offering financial reimbursement to participants for these expenses incurred. This does not just impact clinical trial participants, but their caregivers as well.
Part of Greenphire’s mission is to increase access to all clinical trial participants. By removing the financial and logistical burdens from participants we have seen an increase in retention of patients which includes those patients who have been historically underserved. We focus on removing those burdens that many participants have cited as a reason for dropping out of a trial. Time off work, multiple visits to the clinic, and transportation are key issues that put financial strain on clinical trial participants, and this is amplified in communities that are diverse and historically underserved. Our ConneX solution provides customized travel plans to support the participants specific travel needs. Our reloadable debit card (ClinCard) allows for sites to make instant payments and reimbursements to participants. Utilizing technology can make trials more efficient and run more seamlessly. In particular with payment solutions this helps to alleviate the administrative burden from sites who make payments manually and reduces the room for error. Sponsors who employ these services are able to provide consistent implementations of solutions to remove barriers and improve racial and ethnic diversity in clinical trials, and in the long run, are able to help ensure the safe and effective use of medical products for all populations.
Step Three: Commitment – by Greenphire, the Industry, and You
As an industry we can make meaningful change in clinical trials. This change starts with us – let’s move the discussion in the room out into the world to make a meaningful impact. By making efforts to increase trust, awareness, and accessibility for all communities, we can really make trials more effective for everyone, and serve groups of people who do not deserve to be excluded. It’s time for a change, let’s work together to move this vision forward.
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