Diversity Initiatives? Are They Worth It?
When I asked audience members at a panel discussion during the inaugural Clinical Leader Forum, held in Philadelphia on May 10-11, 2017, three questions about diversity in clinical trials, I got some surprising answers.
The questions were:
- How many attendees come from organizations that value diversity?
- How many come from organizations that prioritize diversity?
- How many attendees acknowledge their own personal biases that may impact their ability to effectively address diversification?
Although many in the audience came from organizations that value diversity, there were fewer that came from organizations that are specifically prioritizing diversity. Still fewer felt that their own personal biases could influence the efforts of diversity initiatives. Some also said it would be challenging to prioritize a diverse patient pool over meeting trial enrollment numbers.
I was moderating a panel of experts tasked with “Solving the problem of a diversified patient pool.” Panel members were from the pharmaceutical industry, organizations that facilitate diversity in clinical trials, and the federal government: Karen Brooks Correa, Senior Director of Clinical Operations, Adare Pharmaceuticals; Theresa Devins, Senior Director of Site Operations and Strategic Alliance Development, Boehringer Ingelheim; Fabian Sandoval, CEO and Research Director, Emerson Clinical Research Institute; and John Whyte Director of Professional Affairs and Stakeholder Engagement, FDA.
One of the questions raised during the panel discussion was whether diversity initiatives (efforts to involve minorities, women and the elderly in clinical trials) were “a thing of the past” given the rise of precision genomic medicine. The panelists said it is still valid to recruit for diverse clinical trials. Important reasons for this type of recruitment included safety and responses to medications, the dire predictions of cancer incidence increasing in minorities over the next decade, and greater liabilities on pharmaceutical companies with regard to warning claims because of the increased capabilities to obtain data on smaller groups or individual patients.
After identifying barriers to recruitment, the panel provided a list of seven (7) strategies to improve patient diversity in clinical trials including:
1) Listen to the voice of the patient
What are their needs? Transportation? Parking? Childcare? Time off? Reduced visits to the clinical trial setting? This information is easily available through a social media community of patients and caregivers like Inspire.
With over one million members, Inspire is a community of patients and caregivers who have integrated the platform into their lives. Patients come to Inspire regularly because it is available as a support resource, 24 hours a day, 7 days a week. Inspire’s patients are engaged and available.1 An example of Inspire’s engaged and accessible patients can be found in this case study in which Inspire obtained almost 15,000 data points from patients in a little over 24 hours.2 A recent post on Patient Pulse describes a research study verifying valuable patient-centered data on Inspire.3
2) Finding cohorts
The National Minority Quality Forum used zip code mapping, or geocoding, to identify regions in the US with high densities of minority populations and learned that 80% of minorities live in only 20% of US Zip Codes.4 This information could be used to locate trial sites in such a way as to reduce the distances that minority patients would have to travel.
3) Community outreach
Fabian Sandoval said engaging the community outside of the clinical setting is a useful step in developing patient-centric language and authentic dialogue with groups that have been left out of clinical trials in the past. This includes reaching out to community organizations like churches and advocacy groups. A number of academic studies conducted used community-based participatory research to engage community leaders in obtaining support for projects. To reach members of the African American community, researchers have utilized the community outreach occurring in churches, barbershops, and beauty salons. These outreach efforts engage prospective participants before they are in the doctor’s office.5
Social media communities, like Inspire, are also places for outreach. Web-based direct-to-participant opportunities are occurring through online communities. As a recent example, collaboration between metastatic breast cancer organizations, the Broad Institute, and the Dana-Farber Cancer Institute has led to the Metastatic Breast Cancer Project.6
4) Collaborations with Public Hospitals
A recent New York Times article featured a collaboration between Memorial Sloan Kettering Cancer Center and the Queens Hospital Cancer Center, part of the NYC Health & Hospitals/Queens, a public hospital. The collaboration has increased minority involvement in clinical trials.7
For more on the seven (7) strategies and further information, download our eBook, Diversity Initiatives? Are They Worth It?
Inspire offers a trusted community to patients and caregivers. Our goal with this blog, this website and our content is to provide the life science industry access to the true, authentic patient voice. In so doing, we support faithful operationalization of patient-centricity. Take a look at our case studies, eBooks and news outlet coverage.
1 Taylor, D. (2017). A Researcher’s Goldmine: Quality, Motivated Participants, Fast.
[Web log] https://newsletter1.wpengine.com/patient-engagement/market-research-participants/
2 Complex Quant To Fill Gaps In the Patient Journey [Case Study] https://newsletter1.wpengine.com/resource/complex-quant-to-fill-gaps-in-the-patient-journey/
3 Terkowitz, J. (2017). Research Confirms: Valuable Patient Centered Data on Inspire. [Web log] https://newsletter1.wpengine.com/patient-engagement/valuable-patient-centered-data/
4 Coberley, C. et.al. (2007). Effectiveness of disease management programs on improving diabetes care for individuals in health-disparate areas. Disease Management. 10(3):147-55. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/17590145
5 Dialogues on Diversifying Clinical Trials Successful Strategies for Engaging Women and Minorities in Clinical Trials. (2011, September). The Society for Women’s Health Research United States Food and Drug Administration. Office of Women’s Health. Washington, DC Retrieved from https://www.fda.gov/downloads/ScienceResearch/SpecialTopics/WomensHealthResearch/UCM334959.pdf
7 Grady, D. (2016, December 23) In cancer trials, minorities face extra hurdles, The New York Times. Retrieved from https://www.nytimes.com/2016/12/23/health/cancer-trials-immunotherapy.html