The healthcare industry is coming to terms with the longstanding practice of clinical trials that underrepresented clinically relevant communities—a practice with potentially serious implications. In explaining the issue, the National Institutes of Health (NIH) notes that for years most trials were based on white male participants. Meanwhile the life sciences market research trade association, Intellus, noted that market insights participants are often white, female, and upper middle income, even when healthcare professional (HCP) prescribers and patients encompass a wide range of backgrounds.
As the NIH states, sourcing feedback from just one demographic group can create a gap in fundamental understanding of diseases and responses to treatments, impacting clinical decisions, guidance that physicians offer to patients, and new treatment development.
Pharma companies are working hard to improve diversity in both drug-related trials and in the ways they do business. They are measuring internal and external teams on ensuring that data reflects an understanding of the impact on diverse populations, acknowledging on some level that avoiding institutional biases is important.
Yet demonstrating representation means more than featuring multiple ethnic and racial backgrounds in marketing materials. Drug development and commercialization teams need to actively seek insights from communities that likely do not look at all like themselves and utilize new approaches that balance privacy considerations and practicality to obtain them.
Since demographics, culture, and socioeconomic status impact a participant’s lived experiences and behavior, it’s important to source them for consideration. Yet questions about demographics have become a tricky domain with the potential to offend the target market and negatively impact corporate reputation downstream. In many instances, when the right data framework is in place—for instance when data about participants’ ethnicity, gender, and socioeconomic background can be informed from other sources—questions are better not asked at all.
A New Playbook
Intellus members report receiving far more requests for sample diversity than ever before. To that end, in 2022 Intellus formed its Diversity, Equity, and Inclusion Task Force to rally multiple parties including pharma and biotech firms, insights providers, and panel recruitment experts to close this gap.
Yet simple tactics matter. Leveraging existing data sources to obtain basic info can mitigate significant research participant frustration. When done thoughtfully, diverse recruitment is indeed possible even with “over-marketed” groups who can be skeptical about enlisting in new initiatives.
An eight-point guideline can assist teams in sourcing insights today that focus on attributes that mean the most to the research, while also telling a more complete story.
1. Ensure diverse recruiting is considered and have soft quotas. Recruit participants where your desired audience feels comfortable and represented within trusted organizations and communities.
2. Offer a platform and opportunity. Look for key opinion leader (KOL) groups that may have a diversified focus or audience where your offering can be incorporated without seeming like a hard sell.
3. Use language easily understood across literacy levels and cultures, avoiding colloquialisms, idioms, and the like. Leverage internal DEI committees to stay current on nomenclature and how best to ask questions and avoid unforeseen sensitivities.
4. Design accessible materials for vision or hearing impaired, including any stimuli.
5. Phrase questions openly so participants are clear about what you are trying to learn. For in-person focus groups, allow opportunities for quiet participants to talk/provide feedback to make them to feel included.
6. Ensure accessible locations, transportation, and time of day if in person.
7. Allow for bilingual moderators if needed based on therapy areas and demographic mix to limit “code-switching” between languages or dialects.
8. Provide moderator options when appropriate, to empower participants to create the space they want and feel most comfortable with.
Example Shows New Options
For example, a podcast run by two Black physicians sourced a more ethnically diverse HCP panel to inform research it needed to perform. The effort collected data from attending physicians and medical resident physicians related to their perspectives on the availability of diversity training and education they receive(d), as well as what their experiences are in the professional environment. On the podcast, the duo talked about why participating in research with their peers will ensure the data collected is diverse and representative.
An Evolving Domain
The best strategy for sourcing diverse insights is still a new domain. Certain efforts may require an investment of more time and focus. Yet the reward of acknowledging every voice, and making sure all are heard, is great. The more trust the healthcare and patient community has in life sciences research, the more transparent and engaged they will be overall.