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Platform for Engaging Everyone Responsibly

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The Platform for Engaging Everyone Responsibly (PEER) employs a combination of browser-based and mobile user interfaces to create a highly engaging, intuitive, consumer-centric, privacy-assured, and—importantly—customizable portal and service.  PEER is the basis for the PCORI award to Genetic Alliance - Community Engaged Network for All.

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). For example, the TrialsFinder Patient Portal enables participants to make their clinical information available for research and to set individual permissions under which the participants’ health information may be accessed and used. Similarly, the RecruitSource Researcher Portal enables researchers to query and access PEER data in accordance with PEER security policy and the access permissions established by participants.

PEER is used to collect self-reported clinical data, and eventually electronic health record (EHR) data, transmitted by participants’ providers. The surveys used to collect data are designed by disease advocacy communities, clinicians, and researchers. 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 the advocates, clinicians, and investigators to create a customized site, including the gamified 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. 

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 Making More Health Changemakers competition.

Genetic Alliance is engaged in a large Patient-focused Drug Development project to assist disease communities in presenting their perspective to FDA.

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

 

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