As we explored in our previous blog post, Advocacy groups have increasingly been collaborating with the pharmaceutical industry over a wide range of areas, and we expect to see the number and impact of these collaborations to grow over the next few years. One of the major areas of this growth will be in advocacy groups supporting Diversity, Equity and Inclusion work.
Diversity, Equity and Inclusion (DEI) isn’t a new concept, but what has changed is how this concept is understood by the industry. This work was primarily considered to be for an internal purpose: asking questions like ‘how do we hire and retain a team that is diverse using strategies to promote equity and inclusion?’. While this is a critical part of addressing DEI within organizations, those working on clinical trials have another important challenge to address: how to establish diversity, equity and inclusion within clinical trial recruitment?
While this is not a new problem, a few specific events led to its prominence in the list of areas of improvement for clinical research:
- The COVID-19 pandemic and the rapid development of critical treatments and vaccines to support the end of the pandemic identified the need to ensure that underrepresented and minority populations were included in vaccine clinical trials. The FDA also supported guidance encouraging treatments and vaccines working on COVID-19 to have representation among diverse community groups as part of the different phases of clinical trials.
- The murder of George Floyd and subsequent protests highlighted the gaps still observed in our society regarding racism and how they must be addressed in internal organizations – and in clinical research as a whole.
- Advocacy groups and patient leaders are more heard now: Advocacy groups have been sharing these messages constantly, and the industry has started to not only listen, but address these concerns too.
These changes have led to our current situation where Diversity, Equity and Inclusion are fully part of the clinical trial conversation. Advocacy groups – as experts of their condition and a provisioner of resources/information to their patient communities -have been embraced as a partner in developing strategies and action plans for improving DEI in clinical trials.
There are several ways to collaborate with advocacy groups to further diversity, equity and inclusion efforts:
- Involve advocacy groups early in supporting clinical trial design and protocol development. Advocacy groups and their patient communities can provide critical insights on their current condition and their needs which need to be met to participate in clinical trials.
- Advocacy groups can support how recruitment should be designed to ultimately allow for participation among diverse groups.
- Engage advocacy in sharing education about clinical trials is important, especially to support communities that observe disparities in health access and education. Delivering educational resources or supporting advocacy leaders in developing resources can go a long way in building trust and increasing education about clinical trials for all communities.
- These engagements should not end when clinical trials end. With advocacy, pharmaceutical companies can pursue long-term partnerships that are focused on win-win benefits. Sharing results and information early and often about clinical trial results and future timelines allows advocacy groups to maintain trust and support long-term partnerships within the industry.
With these steps, advocacy engagement can truly be used to make the entire clinical trial process more diverse, equitable and inclusive. Leapcure, through its mission to connect advocacy groups and pharmaceutical companies to uplift the patient voice, is dedicated to this mission and it forms a part of every project we take on.
Our last blog post of this series will explore the predictions for what advocacy innovations we expect for 2023 that will truly change the collaborations between pharma and advocacy. Stay tuned!