Dr C Daniel Mullins on Building Trust Between Patients and Researchers

Historically, the biggest barrier to enrolling diverse populations in clinical trials has been a lack of establishing trusting relationships between researchers and communities and their residents, explained C. Daniel Mullins, PhD, professor in the Pharmaceutical Health Services Research Department at the University of Maryland School of Pharmacy.

What are the barriers to enrolling diverse populations in clinical trials?

A lot of people think that there are major barriers to finding diverse populations for clinical trials. I think the historical reason for this is that we haven’t engaged communities. You find patients where they live, where they work. So it requires that we think differently about how we recruit.

First we need to establish trusted relationships with communities, and then having done that, it’s much more easy for us to then go on to recruit patients from those communities. So rather than accepting that this is a barrier, I think we need to address the barrier head on.

What is the importance of building and maintaining trust among these patients?

Building trust is one of the hardest things to do and trust is one of the easiest things to lose. This is true in any relationship. If you think about your family, how many times do you have a family member who gets upset because they think you did them wrong, so to speak?

Patients are the same way. Communities are the same way. One of the things that we need to remember, though, is that if you’ve lost trust, you can rebuild. We all make mistakes—researchers are no exception.

So if we’re genuinely interested in the patient’s health and if we’re genuinely looking forward to working with the community to help them get their questions answered about how to improve their health, then we need to build trust. We need to recognize that sometimes that trust may be on shaky ground, but we can rebuild that trust if we are there for them. It does require that as researchers we don’t do helicopter research. We don’t go into a community, grab data, and then leave, never to be seen again. We need to remain with our communities if we want them to trust us.

Transcript (slightly modified)

What recommendations do you have for developing patient-centered outcomes research studies?

If we’re going to do truly patient-centered research, we need to learn to listen. Patients’ voices are the most powerful way that we can transform the research enterprise in the United States. And patients know what they want to learn.

By studying what patients want to learn and answering their questions, we’re most likely to deliver solutions that will help them to improve their health. So it’s about answering someone’s question, not your question as a researcher.