I had the pleasure of hosting a webinar on best practices for working with advocacy groups. The presentation, Six Degrees of Kevin Bacon: Building and Maintaining Positive Relationships with Advocacy Groups, reviewed the importance of networking and connecting to build relationships with advocacy organizations for clinical trials. The approach to working with advocacy groups has changed. It is not just about the one connection you may have with one organization… It is about working with the condition community as a whole for one common goal. Before and after the presentation, I received several questions about working with advocacy groups. In this blog, I will share a few of those questions and insights.
How do you get rid of the negative stereotypes associated with clinical trials and promote a more positive image?
I think it is important to note that more and more advocacy groups are becoming well informed about clinical research, including, the process, confidentiality restrictions, protocols, etc. In the discussions I have had with advocacy organizations, many say they are concerned about the promotion of one study over another. If they work with one sponsor to raise awareness of a specific clinical research opportunity, and they do not pay attention to another study that might benefit their members, is that favoritism? Seems as though that would not be the most beneficial process for helping their members find clinical trials that could help. It is important for clinical research sponsors to incorporate a plan for patients so if they do not qualify for their study, they also make available all of the other studies available for this condition. That way there is an avenue for patients to stay informed about clinical research and eases the advocacy organization’s worry about promoting one study over another. As a sponsor, your task is to put your study in the best position possible to enroll. In addition, there is a corporate responsibility to help patients find the study that fits for them.
How does working with advocacy groups as a patient recruitment tactic differ in the U.S. as compared to outside of the U.S.?
No matter where you are in the world, it all comes down to how educated the advocacy group is about clinical research and what their comfort level is in working with sponsors. Some organizations are going to have restrictions. Some countries are going to have restrictions. Understanding those restrictions and evaluating the options you have to work with will help shape and determine the tactics you use.
Getting time with the advocacy groups can be difficult, as the competition for their attention is increasing. What do you suggest to support our efforts?
This is why building relationships with advocacy is so important. I think there is this common misconception that you only have to work with advocacy groups when you have a specific study in mind. That simply is not the case. Sponsors should never stop working with advocacy groups. At the beginning of this blog, I wrote about how it is not about one connection at one advocacy organization, it is about working with the condition community as a whole. This is another reason why that is so important. Advocacy groups are being called upon more and more. We are competing for their time. Try to work with as many advocacy organizations as you can. By maintaining relationships and working with more advocacy groups, you decrease the amount of competing time with advocacy groups.
That’s all for now, folks! Stay tuned next week when I tackle some more questions from the webinar about partnering with advocacy groups for outreach, the timing of outreach, and best methods to locate advocacy groups. Until then, please feel free to download BBK's eBook on Next Generation Social Media Tactics for Patient Recruitment, which addresses more best practices when working with advocacy groups online.