Platform for Engaging Everyone Responsibly
Our Platform for Engaging Everyone Responsibly (PEER) is a highly customizable registry system used to collect privacy-assured health information, which 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 view two demonstratio videos, which show how PEER can be customized for participants, and the content management system that makes that customization possible.
To experience a full demo of PEER deployed for a disease advocacy organization, click here: JSRDF Demo Site. The image shown to the right is what the JS-LIFE Demo portal looks like from the outside. Clicking the 'Start Now!' button brings participants into the portal to begin taking surveys.
Why Use PEER?
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 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.
One of the key elements of PEER 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.
For more information about customizing PEER, please visit our White Label project page.
PEER in Context
Genetic Alliance, together with 10 disease advocacy organizations, UCSF, UCD and Private Access, was named by PCORI (the Patient-Centered Outcomes Research Institute) as one of 29 groups selected to form the National Patient-Centered Clinical Research Network (PCORnet). We joined the network in Phase I, and have been awarded a Phase II contract as well. This project is being described as "one of the most massive projects in the history of clinical research”. Each of our ten disease groups runs a PEER portal, and is using data collected there to conduct patient-centered research. You can see the press release here, and you can also read about the project on PCORI's site.
Patient-Focused Drug Development with the Food and Drug Administration
Genetic Alliance is also 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 PEER and collect data for the program. As the press release issued by PhRMA indicates, this work 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. We worked with various sickle cell communities to locate patients who were willing to respond through PEER as a way of supplementing the docket through early April. This initiative has also provided us with an opportunity to upgrade PEER to enable translation into any foreign language (the first of which will be Spanish), as well as to test the effectiveness of electronic tablets, used by patient outreach volunteers in sickle cell treatment centers and physician offices. In subsequent months, PEER has also been used to collect docket data from individuals with ideopathic pulmonary fibrosis and gastroparesis. You can view this panel discussion regarding the PEER system and FDA initiative.
More recently, Genetic Alliance began a similar project with the Center for Devices and Radiological Health on obesity. As part of this project, the Duke Clinical Research Institute is studying the science of patient preference, together with the platform and our work.
Robert Wood Johnson Foundation Project
At the beginning of 2015, 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 as simply as a Facebook account. The ’white label’ version of PEER includes 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. We are currently working with fifteen organizations to establish portals, and will bring on a second wave in early 2016 (see the RFP, which just went out, here)
White House Champions of Change for Precision Medicine
In addition to 9 champions, the White House honored 5 platforms on July 8, 2015. PEER was named as one of these platforms. You can view a short, three-minute pitch from the event here.
Live PEER Sites
Currently, there are 19 live PEER sites. This means that the sites are published online and are collecting participant information and health data. To view the full list of live PEER sites, complete with links to each, click here.
- AliveAndKickn: HEROIC Registry (Hereditary Cancer Research Champions)
- Alstrom Syndrome International: Alstrom Research Connect and Family Exchange
- Association for X and Y Chromosome Variations: AXYS AXYON Registry
- Celiac Disease Foundation: iCureCeliac
- Dyskeratosis Congenita Outreach
- The Fibrolamellar Registry
- 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 Patient Registry
- Patient Preference Information: Share Your Opinion On Medical Devices For Weight Loss
- PEERPlatform.org: Your Data Matters
- PXE International
- Registries for All (Reg4All)
- Sickle Cell Disease Association of America, Southern Connecticut Inc.
- United Mitochondrial Disease Foundation: Mitochondrial Disease Community Registry
Condition and Disease Surveys
There are currently 39 conditions and diseases that have surveys offered through PEER. This list is continually growing through the white label project, the Community Engaged Network for All (CENA), and other efforts (including individual registry projects, and our work on patient preference with the FDA). To view the complete list of conditions and diseases with surveys offered through PEER, click here.
- Alström syndrome
- Arylsulfatase A deficiency
- Austin disease
- Breast cancer
- Celiac disease
- Cogan-type oculomotor apraxia
- Dekaban-Arima syndrome
- Dyskeratosis congenita
- Familial pulmonary fibrosis
- Fibrolamellar hepatocellular carcinoma
- Gaucher disease
- Inflammatory bowel disease
- Inflammatory breast cancer
- Jacobs syndrome
- Joubert syndrome
- Juvenile nephronophthisis
- Klinefelter syndrome and associated conditions
- Liver cancer
- Meckel-Gruber syndrome
- Metachromatic leukodystrophy (MLD)
- Mitochondrial diseases
- Multiple sulfatase deficiency
- Ovarian cancer
- Pancreatic cancer
- Pseudoxanthoma elasticum (PXE)
- Saposin B deficiency
- Senior-Loken syndrome
- Sex chromosome aneuploidy
- Sickle cell
- Telomere biology disorder/syndrome
- Trisomy X
- Varadi-Papp syndrome
- X and Y chromosome variations
Learn More about PEER
The videos below provide more information about how PEER works. The first video provides an overview of PEER from the patient perspective, and the second video details how RecruitSource works to link participants using PEER with the right researchers for their specific condition and needs.
Read about PEER in the News
Privacy Maintenance through Private Access
Private Access, an award winning consent management and access control technology developer, is the technology partner for this platform.