Platform for Engaging Everyone Responsibly
The Platform for Engaging Everyone Responsibly (PEER) is a unique, award-winning technology solution for collecting health data directly from individuals. The platform, which has been designed to accommodate a variety of attitudes about data sharing and privacy, meets individuals where they are by giving them complete control over how their data is shared for research. By placing control in the hands of the individual, PEER allows its participants to share data not only for specific purposes (for instance, a registry built to further research about a specific condition), but to potentially share data more broadly as well (for instance, with researchers who are working on other conditions or topics of interest, or even with clinical research networks like PCORnet).
Organizations and communities interested in using PEER to collect individual health data for a specific purpose do so by creating customized registries. As “registry sponsors”, these organizations and communities use PEER’s content management system, PEER for Research, to design registry content such as surveys and site branding. Each of these registries is its own "PEER portal", which, while specific to a given community, is also connected to PEER's larger database. Registry sponsors and researchers can thus query data from a specific portal or from multiple portals. The only requirement for data access is that the individuals who contributed the data must have agreed to share!
Currently, PEER is used by more than 45 organizations and communities who serve more than 60 conditions, and has over 15,000 individual participants (to see a complete list or organizations and conditions served, please visit the associated page. In 2015, PEER was also honored by the White House as one of nine leading platforms in the advancement of precision medicine. At the event Genetic Alliance’s President and CEO, Sharon Terry, also announced a new feature for PEER: the ability to transfer data from Electronic Health Records (EHR) systems. Going forward, Genetic Alliance seeks to expand PEER’s data collection capabilities by:
- Incorporating tools to capture genomic data (genetic sequencing data) and family health history data.
- Building PEER’s capacity for engagement by developing a mobile-optimized user interface and by making PEER available in multiple languages.
We encourage groups interested in the development of these or other features to learn more about our open source project for PEER on the PEER OSS Project page, which will define our approach to feature development going forward.
Health data is a critical component to the advancement of new treatments, research, and medical technology. However, it is often unclear how individual health data is used and who gains access to the data individuals provide. In recent years, the US Department of Health and Human Services (HHS) sought to make the collection and sharing of health data more accountable, transparent, informative, and autonomous for the public. The HHS accomplished this by incorporating the Fair Information Practices Principles (FIPPS) into a new framework called the Nationwide Privacy and Security Framework for Electronic Exchange of Individually Identifiable Health Information. The framework is designed to enable data sharing and use while maintaining trust between participants sharing data, and users of the data such as researchers, research networks, and organizations sponsoring registries.
PEER is an innovative solution embodying the principles of the HHS’s framework, and is designed to promote privacy, fairness, and respect for individuals sharing their health data. The platform was developed by Genetic Alliance in 2011 in partnership with Private Access, Inc., an award winning consent management and access technology developer, to embed customizable data sharing and privacy settings. As part of these settings, PEER also features content from community-based guides, who provide real examples of how to customize settings that align with diverse individual preferences and values.
To learn more about the importance of protecting and understanding how individual health data is shared, please read our paper on privacy, fairness, and respect for individuals.
How Does PEER Work?
The PEER platform consists of three core components:
- A data entry facility where participants enter health data and contact information.
- A data query facility where researchers and PEER portal sponsors can query that data.
- A participant’s own “privacy directives” (set using PEER’s data sharing and privacy settings), which govern what’s accessible to whom in the data query facility.
To view a demonstration of the PEER platform from the participant perspective, please watch our video about PEER's participant side. To view a demonstration of the platform from the perspective of a PEER portal sponsor (organization or community setting up a registry and later querying data), please watch our video about PEER's administrative portal, PEER for Research. If you are interested in PEER tour and/or interested in starting a PEER registry, please email the PEER team at firstname.lastname@example.org.
Who is Using PEER?
For a complete list of organizations using PEER and the conditions they serve, please refer to the associated page.
Powering People-Centered Research: The Community Engaged Network for All (CENA)
CENA is a network led by Genetic Alliance and 11 different disease advocacy organizations using PEER to advance participant-driven research. CENA’s goal is to incorporate participants (including individuals diagnosed with a condition and those individuals’ families and communities) into the research process by sharing health data and driving research priorities. The 11 advocacy organizations engage participants in their communities to determine priority concerns regarding specific conditions while simultaneously collecting survey data to inform these concerns using PEER. The data is then made available to researchers working with the communities based on participants’ individual data sharing and privacy settings. By supporting a broadly accessible online environment where communities and researchers have equal voice in the development of research hypotheses, CENA is piloting and facilitating new methods of collaboration among researchers and participants.
CENA is also a member of PCORnet, the National Patient-Centered Clinical Research Network, an innovative initiative to conduct clinical research faster, easier, and less costly than is traditionally possible. PCORnet is changing the culture of clinical research by recognizing that it must be driven by the power of people and their communities. The Network is comprised of 20 patient-powered research networks (PPRNs) focused on engaging individuals, families, and communities affected by rare and common diseases, and 13 clinical data research networks (CDRNs) engaging participants and communities within health systems. As part of PCORnet, CENA aims to drive people-centered research on a larger scale among all players within the healthcare system.
To learn more about the CENA, please visit the CENA page, and to learn more about PCORnet, please visit PCORnet's website.
Making PEER Accessible and Scalable: The White Label Project with the Robert Wood Johnson Foundation
The Robert Wood Johnson Foundation awarded Genetic Alliance with a $500,000 grant to ‘white label’ PEER in late 2014. The grant supports efforts to develop PEER’s content management system and documentation suite, and enroll 30 different organizations and communities to test the system. After the completion of the White Label project, organizations and communities will be able to set up PEER portals as simply as they might create a Facebook page.
In 2015, 15 organizations were selected for the first phase of the White Label project through an RFP. These organizations worked to establish PEER portals and engage their communities using an early version of PEER’s content management system and standard operating procedures, and provided feedback on that experience throughout. In March of 2016, an additional 13 organizations were selected to go through this same process, and continue to work with Genetic Alliance to refine the White Label experience.
To learn more about the White Label Project, please visit the associated project page on Genetic Alliance's website.
Driving Patient-Focused Drug Development: Collecting Patient Preference Information to be shared with the Food and Drug Administration (FDA)
In late 2013, Genetic Alliance received a grant from the Pharmaceutical Research and Manufacturers of America (PhRMA) to collect data from different disease communities as part of the Food and Drug Administration’s (FDA’s) patient-focused drug development initiative. Traditionally, the FDA hosts in-person hearings to collect data from patients and caregivers on treatment needs and patient experience with regards to a specific disease; yet this approach limits the number of individuals who are able to participate and share feedback.
As part of this project Genetic Alliance has deployed PEER with seven different disease advocacy organizations serving three different disease areas under FDA review (sickle cell disease, idiopathic pulmonary fibrosis, and gastroparesis and related conditions), in order to determine whether PEER is an effective tool for crowdsourcing patient and caregiver feedback.
To learn more about this project and how it impacts the FDA’s Patient-Focused Drug Development Initiative and related programs, please read the project press release. To learn more about Genetic Alliance’s role in the project, please visit our project page.
Patient Preference Information for a Specific Intervention: Pilot Project with the Center for Devices and Radiological Health at the FDA
Genetic Alliance is also partnering with the Center for Devices and Radiological Health at the Food and Drug Administration to conduct a pilot project to assess whether PEER can be used to collect patient preference data around specific interventions. With input from the Duke Clinical Research Institute and the Obesity Action Coalition, we have developed a survey to capture data around surgically-implanted medical devices for weight loss, and the amount of risk that different patient communities will tolerate from such devices given a certain amount of benefit the device produces for patients. Incorporating and understanding this type of patient preference information into regulatory decision-making is increasingly a vital part of the FDA’s process.
If you are interested in learning more about PEER, receiving a PEER tour, and/or interesting in starting a PEER registry, please contact the PEER team at email@example.com.