Strategies to Bridge Gaps Between Study Participants and Industry

ACT: What strategies can sponsors employ to bridge the gaps between study participants and the industry, ensuring open and continuous dialogue and achieving true patient centricity?

Birchard: I always love to back up and talk about the big picture because before we can talk about the how we have to talk about the why, especially when you look at specific indications you have to talk about why is there a gap, what's the history in the context of the gap between the research industry or a sponsor and the patient community? You can't really talk about the how until you understand that. At the ethos of what I do in patient engagement is really trying to advocate against extractive activities when it comes to engagement, so if you're going to engage with the patient community, be really mindful and intentional about not just going and extracting knowledge or extracting insights and then never building a relationship that's mutually beneficial for patient communities as well.

A lot of what I do in this work is inspired by PCORI, the Patient-Centered Outcomes Research Institute because they provide a lot of resources on how to do this meaningful work and not be extractive where you go into a community and you never talk to that community again and what's important is that relationship building, so it's something like if you build these relationships that you're providing as much feedback about how that knowledge that that community gave to you actually influenced your decision making or influenced your product. Also, in a trial for example, disseminating the study results and making it accessible to patients that were in the trial especially. I think that's a big picture of what's really important is that relationship building and making sure you understand the why and the how and making sure it's really intentional.