by Margaret Anderson, Executive Director, FasterCures
There have been a fair number of meetings in Washington of late, and a lot of activity related to appropriations. As I speak at, participate in, and attend meetings, I am always listening closely for themes. Here are a few I am picking up with my bionic ear, and it surprises me how often these themes take us back to basics:
1.) Talk to me. Communication is key. In this era of information overload, it’s always good to align (or re-align) priorities and stay focused. For example, at the recent
IOM Drug Forum meeting on Regulatory Science , I spoke about how if people don’t understand the many steps it takes to get to treatments and cures, and what processes are in play inside FDA, it’s hard for them to understand how FDA does its job or why a term like "regulatory science" is now more important than ever. In speaking to a group at a prominent academic medical center today, we discussed how collaboration across sectors is critical, but it adds another important to-do to the list. With all the multi-tasking we have to do, unless it's someone's job to ensure we collaborate strategically, collaboration falls under the important but not urgent category. In Hill visits for the for a Stronger FDA, I am always reminded about how that face-to-face interaction about these issues is needed. Yup, communication. Alliance
2.) Work with me. Collaboration has to happen to create advances, but it’s not always a picnic. In the words of Bob Dylan, everybody’s gotta serve somebody. And we all come from different cultures and serve different missions. So we were really glad to see the recent FDA-NIH announcement about a new partnership designed to fast-track treatments to patients. We hope we’ll hear about what works well, what's at a stand-still, and what areas we should just call it quits and chalk it off to experience and move on. To collaborate well, you have to know what the pitfalls are, and where it’s failed before. At the
IOM’s recent meeting on "The Public Health Emergency Medical Countermeasures Enterprise" it was great having global health expertise in the room to share lessons learned on process and incentives and apply that to development of vaccines, drugs, and diagnostics for responding to public health emergencies. That discussion was also relevant to the pursuit of therapies for rare and orphan diseases.
At FasterCures, we are looking at some of the thorny issues that stand in the way of collaboration. The list is long and we plan to dive into them deeper this year: biobanking, metrics for medical philanthropists, best practices in the conduct of clinical trials, the value of electronic health records in research, and how we’ll all traverse the valley of death.
3.) It's about me. We will all be patients at some point in our lives and this whole discourse, this enterprise, this system is all about us. We need to always remember to bring the patients into the mix - through effective communications and as a central driver of any collaborative effort. At the
IOM Drug Forum meeting, Garrett Fitzgerald of the cited the success of patient-driven foundations at modeling a more modular approach to drug development. Phil Pizzo of Stanford University School of Medicine mentioned that patient advocacy groups have played a critical role in mediating conflict of interest issues. Ellen Sigal of Friends of Cancer Research showed the power of patient-driven groups in partnership with practitioners, to drive change at the FDA. She said we need to increase the focus in patient groups on advocacy for FDA resources and to partake in discussions about their priority areas. University of Pennsylvania
In search of a-ha moments, what I found were some reminders of just how important it is to get the basics right.