Platform for Engaging Everyone Responsibly
Our Platform for Engaging Everyone Responsibly (PEER) enables individuals to set their own sharing, privacy and data access preferences, in a granular and dynamic manner.
This system undergirds our PCORnet, FDA, and Robert Wood Johnson Foundation projects.
The quickest and best introduction to PEER is a 30 minute webinar, followed by 30 minutes of Q&A, available here.
You can also take PEER for a test run. Experience a full demo of PEER, deployed for a disease advocacy organization, here: PXE Demo Site.
You can also see a video created for low vision users of the PXE portal, on how to create an account, set privacy settings, and begin the survey.
The Platform for Engaging Everyone Responsibly (PEER) creates a highly engaging, intuitive, consumer-centric, privacy-assured, and—importantly—customizable portal and service.
PEER enables participants and their caregivers to share their clinical information and biological specimens within an environment that provides the look and feel of familiar, trusted communities under access-permission rules defined by the participants themselves. PEER provides data-entry, data-query, and privacy-management services that are accessed through standard application programming interfaces (APIs).
PEER is customizeable to provide the look and feel of trusted communities.
PEER is used to collect self-reported clinical data, and soon electronic health record (EHR) data. PEER offers a library of 'common data elements' packaged in 'segments' (instruments) which allow the sponsoring community, organization or affinity group to choose a foundational set of questions and then add questions specific to the condition or issue.
PEER engages individuals in an intuitive manner that is at once informative and non-coercive, empowering individual control over sharing, privacy, and data access. One of the key elements that enables this experience is the use of trusted, community-based guides who provide step-by-step, participant-centric introductions about PEER’s use and accessibility, including how to share health information and set reasonable privacy controls that are consistent with individuals’ preferences and values.
The PEER team trains community members, advocates, clinicians, and investigators to create a customized site, including the survey, guides, and options for sharing. Throughout the development of this system, many ethicists, privacy lawyers, and participants have strongly recommended that each customization offer multiple guides reflecting different perspectives to create an environment of trust. Therefore, each site chooses three well-regarded, knowledgeable community leaders to serve as guides. Each guide describes ways in which participants with low, medium, and high privacy concerns might consider sharing their information; the kinds of considerations he or she feels are important for prospective participants to consider; and the corresponding sharing, privacy, and access settings that participants might employ as a starting point for their own selections. PEER gives each individual an opportunity to set their preferences manually, accept the guides’ suggestions 'as is', or customize a guide's suggestions to take into account their own specific needs and interests.
Community guides provide introductions to granular and dynamic privacy settings within PEER.
PEER in Context
Genetic Alliance - together with 11 disease advocacy organizations, UCSF, UCD and Private Access, - was named as one of 29 groups selected by PCORI (the Patient-Centered Outcomes Research Institute) to form the National Patient-Centered Clinical Research Network (PCORnet). This project is being described as "one of the most massive projects in the history of clinical research". To learn more, visit the project's Press Release, or read about the project on PCORI's site.
PFDD Initiative with the Food and Drug Administration
Genetic Alliance is working in conjunction with the FDA's Patient-Focused Drug Development initiative (PFDD), having received a grant from the Pharmaceutical Research and Manufacturers of America (PhRMA) to employ the PEER system in PFDD. As the Press Release issued by PhRMA indicates, this work is initially focused on three diseases on the FDA's docket for review. The first of these - sickle cell disease - was the subject of hearings in early February 2014, and we worked with various sickle cell communities to locate patients who were willing to respond through the PEER platform as a way of supplementing the docket. This initiative has provided us with an opportunity to upgrade PEER to enable translation into any foreign language (the first of which was Spanish), as well as an opportunity to test the effectiveness of electronic tablets that volunteers used for patient outreach through sickle cell treatment centers and physician offices, in addition to browser-based registration. PEER seeks additional funding to improve the mobile and tablet experience.
Robert Wood Johnson Foundation Project
Genetic Alliance received a $500,000 RWJF grant to ‘white label’ PEER, allowing many groups to set up registries as simply as they can set they up a Facebook account. Using PEER, individuals are able to set data sharing, privacy, and access preferences, and manage their information in a dynamic and granular system. The ’white label’ version of PEER will include a simple dashboard and standard operating procedure to facilitate easy customization of the system by disease advocacy and community organizations wishing to offer it to their members. Interested in being a part of this project? Visit the RWJF PEER Project page and stay tuned for the next RFP!
Live PEER Sites
- Alstrom Syndrome International: Alstrom Research Connect and Family Exchange
- Association for X and Y Chromosome Variations: AXYS AXYON Registry
- Dyskeratosis Congenita Outreach
- Free The Data
- Gastroparesis Patient Association for Cures and Treatments (G-PACT)
- Hepatitis Foundation International: Hepatitis Patient Registry Network (HepPRN)
- Inflammatory Breast Cancer Research Foundation: No Lump Required
- Joubert Syndrome and Related Disorders Foundation: JS-LIFE
- National Gaucher Foundation: Gaucher Network Registry
- North Alabama Sickle Cell Foundation, Inc.
- Pancreatic Cancer Action Network (PanCAN)
- PXE International
- Registries for All (Reg4All)
- Sickle Cell Disease Association of America, Southern Connecticut Inc.
- United Mitochondrial Disease Foundation: Mitochondrial Disease Community Registry
- PEER Platform: Your Data Matters
- Obesity Action Coalition: Your Experience Matters
Condition and Disease Surveys
These are the conditions and diseases that have large surveys offered through PEER. 30 more will be onboarded in 2015 through the RWJF grant, and a dozen more will be onboarded through PCORnet if Genetic Alliance is successful in a Phase II application.
- Alström syndrome
- Breast cancer
- Celiac disease
- Dozens of mitochondrial diseases
- Dyskeratosis congenita
- Gaucher disease
- Inflammatory bowel disease
- Joubert syndrome
- Liver cancer
- Lyme disease
- Metachromatic leukodystrophy (MLD)
- Ovarian cancer
- Pancreatic cancer
- Pseudoxanthoma elasticum (PXE)
- Sickle cell
- X and Y chromosome variations
Learn More about PEER
The webinar mentioned at the beginning of this page provides a broad overview of our Platform for Engaging Everyone Responsibly (PEER), illustrates its high-level architecture; shows how it differs from all other registries; shows the privacy preference part that represents our technology partner Private Access' primary long-term interest; and shows the widget administration portal that we're just beginning to put into use. The first video below provides a high-level overview from the patient perspective, and is being used as the "How it Works" description on the PEER platform-based sites that were developed and launched in connection with the PDUFA V FDA project that we began in 2014. The second video below provides a narrated walk-through of RecruitSource, which is the recruitment-related activity that's made possible by PrivacyLayer and the front-end patient portals. This is alluded to in the participant perspective video as being "...and while you sleep.”
And read about PEER, including customizations, in the news...
- In Genetic Haystacks, We're All Needles
- Incorporation of Patient Perspective on Disease and Treatment Options Critical in Drug Development and Review
- Advocacy groups crowdsourcing patient views on risk-benefit of drugs
- Free the Data's first move: Opening data for breast cancer research
- 3 neat ways to participate in crowdsourced cancer and Alzheimer’s disease research
Private Access, an award winning consent management and access control technology developer, is the technology partner for this platform.
PEER received a significant grant from Sanofi as first prize winner in its Patient Health Innovation Challenge. PEER also received first prize in the Ashoka-Boehringer Ingelheim Changemakers Making More Health competition.