Platform for Engaging Everyone Responsibly (PEER)
1. Genetic Alliance; 2. Private Access; 3. Community Engaged Network for All; 4. Joubert Syndrome and Related Disorders Foundation
Background: Patients are central in biomedical research, yet, are the least used resource. Patients should play a key role in deciding what treatments are best for them, and regulatory agencies should take their needs into account. Health information is also abundant, and analyzing it in the aggregate allows a better understanding of health and more meaningful decision-making on the part of both individuals and their clinicians.
Health information comes in many forms: electronic health records (EHRs), self-reported accounts of living with conditions, self-tracking devices, laboratory measures, and clinical trial data. There is confusion and concern about how to discover, access, and use this information, particularly when that information crosses boundaries between states, organizations, and disciplines. As a result, data “silos” are created because each institution separately administers privacy directives for only the data it receives and/or generates. This siloed approach misses out on the opportunity for more robust science, ethics, and engagement.
The Platform for Engaging Everyone Responsibly (PEER) gives individuals tools to share health information easily. PEER provides a solution to balance between enrolling large cohorts of patients and assuring them that their privacy is protected.
Platform Design: PEER creates a highly engaging, privacy-assured, customizable, and consumer-centric 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 used to collect self-reported clinical, subjective, and electronic health record (EHR) data. PEER engages individuals in an intuitive manner that is at once informative (through live gamification of results) and non-coercive, empowering individual control over sharing, privacy, and data access. One of the key elements that enable 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.
PEER offers a library of 'common data elements‘ packaged in ‘topics' (instruments) which allow the sponsoring community, organization or affinity group to choose a base set of questions and then questions specific to the condition or issue.
Discussion: Individuals using PEER, through communities or independently, can share health data in context, according to individual preferences, resulting in a cross-condition searchable database. PEER achieves this through granular and dynamic sharing, privacy and access controls. All information – both de-identified as well as personal contact information – that is contained in PEER is protected from unauthorized discovery, access, use and/or export through intense security protections in concert with specially designed user tools and services. These web services-based tools (collectively referred to as PrivacyLayer®) support a rules-based, privacy-enabled network infrastructure that permits each participant to express his or her privacy preferences through a combination of advance authorization and dynamic consent permissions which effectively defer a final decision as to whether sharing will be authorized until more specificity is provided by the proposed recipient of such information.
PEER is available as a white label platform for any group to customize and use. The PEER team trains community members, advocates, clinicians, and investigators to create a customized site, including the survey, community-trusted guides, and options for sharing.
Conclusion: Organizations are best postured to use their experience and knowledge of the condition or issue that they represent, their advisory boards, and collective expertise of a network of other stakeholders to design, optimize and implement new questions and to develop a registry. In most cases, it will be the advocacy, healthcare, or other type of organization that will generate and elicit new questions and research ideas from their communities since they are usually most connected with the patients, families, researchers, and participants. They have the strongest perspective on how to properly create an extensible and valuable survey questions being sensitive to bias, context, standardized data collection, etc.
PEER allows critical longitudinal follow-up over time, and enables contact between individual participants and the researchers interested in their particular genotype (genome) or phenotype (symptoms or traits). In turn, when authorized by individual participants, PEER also facilitates the addition of their de-identified information into various research platforms, as well as enables professionals to screen for and contact them for research studies.
Research Opportunities: Currently, only 4% of people participate in clinical trials. PEER will increase this number. Trust communities, healthcare providers’ offices, and other places where the public interacts on a regular basis are perfect places to provide an easy on ramp to registries and clinical trials, such as PEER. Aggregating data over time and across conditions will provide resources that will allow the ‘data to speak’ and hypotheses to be generated. Opportunities thereby abound to consider systems biology, translational research, clinical development and market opportunities.
PEER is funded by PCORI, Robert Wood Johnson Foundation and participates in the Patient-Focused Drug Development program of the FDA.