Building Trust in Ethnically Diverse and Underrepresented MS Patients

Jeffrey Dunn, MD: Many patients whether they’re considering participation in a clinical trial or even if they’re beginning just a proven FDA-approved treatment are going to seek that level of trust and maybe not necessarily be able to find it in a single physician but they might look to their family, there are certainly certain individuals that do this, there are certain cultures where this is done with emphasis. Do you make it a point to involve family in decisions that are this important whether it be starting a new medication or clinical trial participation? Do you bring the family in to help them support and reassure to build that trust that’s essential for important decision making?

Regina Berkovich, MD, PhD: I do, but I must tell you that it’s also different coming in different ethnic backgrounds. I’ve been successful by bringing the family member to the scene and then I wasn’t at some points. I would expect to have some support and then I wasn’t given that support or the patient wasn’t given that support so you can’t predict all the time but of course you try first because it may help.

Jeffrey Dunn, MD: Trust we can all agree is critical for these important decisions so spending time, earning trust, maybe involving family; those are all key elements, potential building blocks you would suggest. Are there other things that you found to be successful in earning that critical trust?

Regina Berkovich, MD, PhD: The more we talk about it the more I realize that the clinical trial sponsors, they don’t even understand how much time was spent in explaining those protocols and pros and cons of the clinical trials and sometimes only to hear after hours of discussion that “No, after all I have considered it and I decided not to participate.” Indeed, enrollment into clinical trial is a risky business, it can be because you spend a lot of time and you may never enroll these patients; and, still, we should continue doing it because this is the only way. What are the other ways of earning trust? Patience.

Jeffrey Dunn, MD: How do you mean?

Regina Berkovich, MD, PhD: If you show that you are not running and you’re ready to answer all the questions—and this is where a nurse practitioner can also be helpful because at some point she may deliver the information a bit better or more accessible to some people. You try different things but I believe it’s important to show that you don’t lose interest after patient says “No. I don’t want to be part of this study.” It’s critical not to show that “Oh now that’s it, I am no longer interested in you.”

Transcript Edited for Clarity