WHY PMI? Sharon Terry's presentation at the first workshop.

Sharon Terry, President & CEO of Genetic Alliance, kicks off the first Precision Medicine Initiative Working Group meeting speaking on the importance and urgency of gathering patient driven data.

PEER is Transforming Health Systems

The Platform for Engaging Everyone -- or "PEER" for short -- is the world's first participant-controlled, cross-condition health registry. From the ground up, PEER is based on the principle that genuinely engaging individuals in medical research demands giving each individual (or their legally authorized representative) the power to decide for herself how, and with whom, she wishes to share her health information.

"This is the first time that everyone, regardless of health or disease state, can contribute their health information, get instant feedback on how they compare with others, and control who sees and uses their information," explains Sharon Terry, the president and CEO of Genetic Alliance. Sharon adds that at a time when it is critical to share the clinical data of millions of individuals to accelerate health discoveries, and still respect their diverse wishes, PEER responds with a brutally transparent and transformative idea... let each individual decide with respect to his information why and with whom he wants to share his data.

And what if an individual doesn't yet have enough information to make such a decision with respect to sharing his or her information? This is not a problem in PEER because rather than compel the individual to make an ill-informed binary decision to opt-in or opt-out of participating, PEER provides the person with a way in which to indicate that she'd be open to considering more specific requests in the future. "This is how people handle such things in real life," explains Private Access founder, Robert Shelton, "and it's exactly the way PEER handles it in the novel registry." Through controls provided by Private Access, PEER builds into the system a way for authorized researchers to express interest in acquiring greater access privileges and to describe why they would like to gain access to this information. This then enables the individual to decide whether or not to grant the requesting party with that access.

Terry adds: "As a parent of two children with a genetic condition, diagnosed after years of diagnostic odyssey and then having to build a research infrastructure for their condition ourselves, I am thrilled that we can offer families and affected individuals an opportunity to easily share their information on whatever terms they conclude are best suited to their circumstances." The degree of granular and dynamic engagement provided by PEER is novel, and assures the participant remains at the center.

Condition-specific advocacy groups and other community-based organizations serve as PEER sponsors under a Software-as-a-Service license. Each group is able to customize their PEER portal, which appears directly on the group's own website. In addition to tailoring the look and feel of the portal to be compatible with their site's theme, each PEER Community sponsor is able to develop questions that focus on the unique needs and interests of the individuals they serve. This assures the highest degree of relevance for both affected persons as well as researchers who are able to access the information to the degree permitted by each participant.

Sponsoring groups also recommend several "guides" who are representative of different perspectives within their community. These guides (see sample videos) assist new participants by suggesting how they balance the interests of privacy and sharing information, and showing how this can be achieved using the Private Access controls.

As advances in genomics, molecular analysis, data processing, and access to data from patients' clinical records through EHR interoperability propel disease research forward, scientists and drug developers face a formidable challenge of engaging the participant. PEER affords a ready answer, which Forbes Magazine named as one of the six models that are transforming health systems around the world.

For more information regarding PEER, contact Tanya Murza, at (202) 966-5557, or complete and submit an interest form and someone from Genetic Alliance be in touch shortly.

With PEER, you decide who sees your data and for what purpose. We use Private Access to let you share as much or as little of your information as you want, with whomever you choose, on your own terms.