Sharon F. Terry is President and CEO of Genetic Alliance, a nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities. In December 2012, Sharon and her team Registries for All Diseases placed first in the first Partners in Patient Health challenge Collaborate | Activate. Today, Sharon joins us to share her experience from Collaborate | Activate and discuss the role of the Patient in the R&D process.
1. Your team won last year’s Collaborate | Activate Challenge with Registries for All Diseases (Reg4All), an online database where patients and scientists share clinical information for treatments. How has winning Collaborate | Activate impacted Reg4All?
Winning the Challenge has had a phenomenal effect overall. It brought Reg4ALL to national attention. This attention resulted in a great deal of interest in seeing the platform deployed in a number of situations. Here are a variety of customizations: Free the Data, TrialsFinder, Sickle Cell Tell the FDA, Liver Disease Outreach.
Further, the funding gave us the ability to be very competitive in a recent Patient Centered Outcomes Research Institute funding opportunity to be part of creating the nation’s clinical research network, called PCORnet. As you can imagine, this is an amazing opportunity and we are delighted to be customizing the platform for ten disease organizations: Alström Syndrome International, Dyskeratosis Congenita Outreach, Inflammatory Breast Cancer Research Foundation, Hepatitis Foundation International, Joubert Syndrome Foundation, KS&A, MLD Foundation, National Gaucher Foundation, and PXE International.
2. The Collaborate Challenges feature a virtual accelerator phase where finalist teams are matched with mentors to refine and iterate their concepts. How did this experience help Registries for All Diseases?
This was challenging and productive. It is always difficult to explain a complex system clearly, and in such a way that a short presentation conveys the power and impact of a new idea. Our mentors were rigorous in their critique and greatly strengthened our conceptualization of the problem and the solution. It was also a creative and generative experience. I am very grateful to them!
3. Your two children were both diagnosed with a rare genetic disease called pseudoxanthoma elasticum (PXE) in 1994. You’ve since worked with a variety of non-profit organizations, patient advocates, and researchers to share knowledge through PXE International and Genetic Alliance. Where do you see points of intersection for researchers, clinicians, patients, and advocates?
I believe more than ever we have got to form a WE. There can be no ‘us’ and ‘them’ anymore – not even benignly seeing each other as different, and not finding the point of collaborative overlap. WE need to create the new ecosystem that will accelerate solutions for all of those who suffer from a variety of conditions. This is not going to be easy. It is going to be painful, in fact. Everyone will have to give up turf, understand where our incentives are align, honestly recognize where they are not, and act. I do not believe that advocacy of the future will look the way it does today, for example. People get their support in many ways through networked communities, not like they did in the 80s and 90s. I believe researchers and clinicians will not occupy distinct spaces with walls between them, they will be players in a continuum for which we need new policies and procedures. And people will not be ‘patient’, we are ready to reclaim our rightful place, and participate in creating better health.
4. How do you see the role of the patient in research and development evolving in the future?
Genetic Alliance, with our partners Private Access, created Reg4ALL and all of the other incarnations of what we now call Platform for Engaging Everyone Responsibly (PEER) because we know that when individuals, families and communities have the tools to engage in research easily and without friction, they will step up and help to shape the new ecosystem that is needed. People are actively engaged in many aspects of their lives with vigor and enthusiasm. Once empowered in health, individuals and families will call on the various other stakeholders to find new solutions and to bravely implement them.
5. Based on your experience with last year’s Challenge, could you offer some words of wisdom for Collaborate | Innovate participants this year?
Relax, you have a great idea. Go deep – push yourself to really get to the nugget of truth in what you have created. The judges chosen by the Collaborate | Innovate Challenge are keenly tuned into what projects will have a large impact. I once had a Genetic Alliance Board member say to me, “You are the shiny brochure for Genetic Alliance.” That is true about you, too. Be clear and concise. Follow your passion and your heart more than your head. Keep it simple and powerful. Use the voices of dissent around you to make your concept better, welcome and embrace them. Go for it. In health, there is a great deal at stake – everything, in fact. You may be the ticket to a new world for biomedical research and those who need you most. Good luck!