The Role Advocacy Plays In Research
In our webinar, “Why Collaborating with Advocacy and Support Groups is Important for Research,” we were fortunate to have speakers from organizations such as STARR Coalition, Mental Health America Georgia, and iResearch Atlanta. In this article, we summarize their experiences with closing the gap between patients and spreading awareness about clinical trials with the patient as the first priority.
Some of the major takeaways from the webinar include:
- Importance of Language - what it means to use certain language such as calling them "subjects" or "patients" which remove the personal element to their identity and how they are perceived.
- Advocacy driving research
- Working to create real, meaningful collaboration
One of our speakers, Sarah Schwartz from Mental Health America of Georgia, currently works in advocacy but has a clinical research background. She provides key insights and a dual perspective from both ends of the recruitment spectrum regarding the challenges of working with advocacy organizations. The stigma of research according to various advocacy groups is how research is “using a vulnerable population to make money” and that language used towards or about patients is found offensive. Overall, we all have the same goal - educate the general public about clinical research and work towards eliminating the stigma to advance healthcare.
We’re a long way from perfect, but the first way to start educating the public is by collaborating with our valuable resources. There is much to learn from advocacy groups and they have much to learn about what is going on in research. If we don’t take the time to establish those relationships demonstrating the difference clinical trials make in advancing research, we miss out on taking that next step on helping those with no other healthcare solution (cancer or rare disease, among others).
Cultivating that relationship with organizations in your local community is only a first step. If your focus is mental health research or any other therapeutic area, you will want to submerge yourself in that community to really gather what goes on the other side of the tracks, so to speak.
Another guest speaker, Luke Kramer from STARR Coalition, emphasized the value of these relationships and how working together will ultimately improve recruitment timelines. Again, by collaborating with local or national organizations, we are able to broaden our potential volunteer population “theoretically affecting efficacy outcomes” with diversity and individuals would be more likely to view clinical trials as a treatment option when coming from a reputable source.
Things to remember:
- Understand the delicate relationship with advocacy – the wrong expectation could ruin your chance of working together
- Advocacy is not a recruiting tool nor part of a business model/ study plan
- Instead, expect them to educate and do outreach so that potential participants begin to see research as an option
For those who did not get the chance to join in during the live presentation, you can watch it on-demand by clicking the button below!