C Space recently hosted a roundtable at the Pharmaceutical Market Research Conference (PMRC), an annual event focused on the most crucial issues facing today’s life sciences market research community, on the topic of incorporating Social Determinants of Health (SDOH) into insights work – and the successes and challenges we face. C Space Health’s Kristin Masoud, Managing Director, Sammy Mason, Associate Director, and Jeff Morrill, Vice President, were joined by Sarepta Therapeutics’ Chris O’Konis, Insights and Analytics Lead, along with 30+ insights leaders from Organon, Merck, ViiV Healthcare, Purdue Pharma L.P., Dyne Therapeutics and more for an important discussion. Here are our four key takeaways from the conversation:

When you are working with niche populations or niche populations within niche populations, patient privacy must take precedence. One corporate researcher shared that they “have the privacy office on speed dial.” For many, it remains an open question and constant battle as to how to balance collecting enough information about the patient to do (and share the results of) holistic, comprehensive research while still protecting PII.

More and more new product launches are for rare diseases or smaller populations than yesterday’s blockbusters, which can lead to a trade-off between finding any patients at all with a given condition vs. finding the full diversity of patients with the condition. 

Again, researchers shared the trade-offs they encounter when taking SDOH into consideration, noting that the time and cost to find the right respondents can be at odds with their timelines and budgets. In the end, researchers agreed that it is worth the time and cost to do it right and be inclusive with the research.

Despite these challenges, attendees shared the many ways they are finding and engaging the “right” respondents. From working with boutique/niche recruiters to thinking about respondent types who might fulfill two different criteria (e.g., counselors/caregivers who might also have experienced the condition themselves in the past), to leveraging social media to meet patients where they are.

Researchers agree that the right insights come from reaching the right audiences, including patients living with rare diseases. In the end, it is worth the time and cost to be inclusive. 

We all agree that the right insights come from reaching the right audiences, including patients living with rare diseases. At C Space, our dedicated team of experts screens and recruits high-quality Community Members from around the world to participate as consultants. Simply put, C Space Community Members are real people we get to know very well because we engage with them – and evolve with them – in ways no one else does. They share more because they appreciate that someone is listening, and their participation fuels your success.

The incorporation of Social Determinants of Health into insights work will continue to evolve, so C Space, Escalent, and Hall & Partners are partnering with life sciences stakeholders within insights, marketing, and strategy teams to stay ahead of the curve on how to do this well, to meet patient, provider and caregiver needs. What has worked for you, and what challenges are you facing? Let’s continue the conversation.