Tools of Engagement: Building patient-centered research networks

By Kristin Schneeman, Program Director, FasterCures

Engaging patients in the research process is more complex and exciting now than ever before. Patient-driven organizations are moving beyond simply creating patient registries or serving as a conduit to participants for clinical trials and are marshaling their forces in new and more comprehensive ways. In a FasterCures Webinar on March 20, participants heard about two exciting new models of such “patient-centered research networks,” the T1D (Type 1 Diabetes) Exchange and Registries for All Diseases.

Dana Ball, CEO of the T1D Exchange, began by saying that after much due diligence about where the barriers and inefficiencies were in research and care for Type 1 patients, the Helmsley Charitable Trust set out to create an end-to-end solution to connect the R&D and healthcare enterprises with the patient resources necessary for all to succeed. What it has built in the T1D Exchange is a national network of 69 clinics treating 100,000 T1D patients, a 26,000-patient registry, and a 1,000-patient “living biobank” (i.e., samples are collected to answer specific questions). Integral to the network is Glu, a social network through which the Exchange is collecting valuable patient insight via surveys and discussions and which serves as a “real time access point for community-driven research using an innovative mobile platform.” With all these tools, the Exchange can share patient data, recruit patients, and collect samples quickly. Ball noted that absolutely critical to the success of the entire Exchange is a carefully constructed universal consent from patients.

The Exchange is meant to be self-sustaining. Ball noted that it provides products and services to academic and industry researchers and insisted that these are not “dirty words” for a nonprofit. “We think of ourselves as a high-quality CRO [contract research organization],” he said, with a unique trust relationship with the patient community. Another element of the sustainability model will be a new nonprofit company called Unitio, to be launched mid-year, which will license the platform the Exchange has created on reasonable terms to other disease groups. Ball noted that none of this would be possible without philanthropic support – no other single sector has the incentives to do this work. He was passionate about the need to educate philanthropists about how to invest for impact – the need for resources to hire good people, to create infrastructure that facilitates the whole enterprise but that others won’t create.

Sharon Terry followed with a presentation about Registries for All Diseases (Reg4All), which recently won the Sanofi Collaborate/Activate challenge – a cross-disease, crowdsourced registry that promises to break down the silos between diseases and gather information from patients in a standardized way. Terry began by noting that while recruiting appropriate patients for trials is viewed as “finding a needle in a haystack,” in fact “the haystack is made of needles” – we are all potential trial participants and just need the engagement, education, and trust to get on the information highway.

Reg4All is an evolution of work that Terry and Genetic Alliance have been involved with for a number of years that continues to widen in scope and sophistication. It is built on the platform of DiseaseInfoSearch, a database that provides disease-specific information and resources about 13,000 different diseases. Reg4All is not a disease-specific registry but rather a platform for individuals to enter self-reported medical information via a “gamefied survey” – and eventually to import clinical data from electronic health records – fully identified and protected. The survey gathers information on both common data elements across diseases and on disease-specific data elements. Patients use very sophisticated privacy software to authorize access at a very granular level about what information different types of users can see, e.g. researchers recruiting for clinical studies.

Participants had many and excellent questions for the panelists, beginning with, “We’ve gone from having none to too many cost-effective open source registry choices. How do we choose…?” Terry commented that there are valid reasons for multiple registries to flourish, and that our goal should not be one solution but rather lots of interoperable solutions. In her view, the granular privacy settings that Reg4All offers are very important in getting there. She mentioned that Genetic Alliance will be hosting a series of nuts and bolts Webinars to instruct groups on topics such as how to leverage or build on an existing registry/biobank, and will provide Reg4All modules others can pick up and use.

Ball closed with another plea for philanthropists and philanthropies to support this kind of project, calling on them to be like Ben Franklin, building libraries instead of buying books for everyone.

Resources

• View the Webinar slides
• Watch an archive of the Webinar
• Innovator: Sharon Terry's Global Database for Disease Research

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