If someone rode off with your bike, you'd call the police.
But if they asked to borrow it for a good reason, most of us would be glad to share.

We think that health information should work in the same way.

The Platform for Engaging Everyone Responsibly, or PEER, is a registry platform designed to build communities of people who appreciate the need for accelerating medical research, but who also value the ability to decide why and with whom they share their information. Through the use of PrivacyLayer® technology (learn more here), individuals using PEER can decide who to share their data with, and how much. The platform enables them to allow or deny access to various entities — or even choose to have those entities ask permission, first.

We believe a system that puts control into the hands of individuals is important not just because it’s data about individuals, but because individuals have the power to do something else: make their data available to share in many places, transcending silos. PEER is a cross-condition platform, that while community-specific, enables participants to share data in many places: with registry sponsors and their partners, but also with larger entities, such as the Nation's Patient-Centered Clinical Research Network or PCORnet. As such, communities can use the platform not only to conduct patient-centric, community-driven research, but ultimately to facilitate larger studies as well.

While connected across the backend, PEER currently operates on an individual community basis. Different organizations and projects can customize the look and feel of the platform and develop their own surveys for data collection, resulting in unique "portals" into PEER for any given community. This website is the repository of the documentation associated with developing and managing one of these portals.

About The Founders

PEER is a co-venture of partners Genetic Alliance and Private Access, which is in the process of moving to an open source environment.

Genetic Alliance, a health advocacy nonprofit, manages and operates PEER. Their mission, which is much broader than their historical genetics mission, specifically includes creating ways for individuals, families, and communities to transform health. PEER is one of the ways they do this. Their work is overseen by a Council and an Ethics Team. PEER is subject to annual IRB approval, as is every project using the platform. For more information, please visit www.geneticalliance.org.


Private Access has pioneered a consumer-centric platform that makes it safe for individuals to allow their confidential information such as personal medical records to be accessible over the Internet. We accomplish this through award-winning technology that extends the current capabilities of Internet-based search engines to include the ability for properly authenticated persons such as doctors, family members, researchers and others to search for highly confidential or sensitive personal information based on "private access" rights that each individual can create to control who can, and cannot, see all or selected parts of his or her personal information. For more information about Private Access, contact Kari Taylor at (949) 502-7890.


About The Site

This wiki provides community groups with all the information needed to successfully develop and launch a patient registry using PEER. For more information about this site, please contact us at gro.mroftalpreep|sutcatnoc#gro.mroftalpreep|sutcatnoc, or visit our legal page.