The Genetic Alliance, a non-profit health advocacy organization, has received a $500,000 grant from the Robert Wood Johnson Foundation to create a “white label” version of the Platform for Engaging Everyone Responsibly (PEER) platform.

Alliance executives said the platform enables individuals to share health information with researchers and each other on their own terms to advance an understanding of health and disease, and to accelerate the development of cohorts for clinical trials.

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.

Choosing community guides, configuring preference choices, and determining which common data elements and validated instruments to use are some of the critical elements in which disease advocacy organizations engage.

“This grant will enable us to make these essential aspects simpler and more cost-effective for anyone interested in creating a registry, conducting a survey, or wishing to embark on other forms of participant-centric research. This project will essentially create a ‘kit’, simplifying registry creation,” said Sharon Terry, CEO of Genetic Alliance, which counts more than 1,200 disease-specific advocacy organizations, as well as universities, private companies, government agencies, and public policy organizations in its network.

The RWJF grant will also provide resources to analyze PEER, offering pre- and post- tests to assess the experience of participants as they make granular and dynamic decisions about data sharing, privacy and access. Genetic Alliance’s Ethics Team will provide their expertise in designing and executing the study of a series of questions, such as: “Does dynamic and granular consent lead to greater and/or more diverse participation in clinical trials? Do researchers have greater or lesser access to data if individuals have more control? Do individuals understand the options in sharing, privacy and data access in the PEER system? Does engagement through advocacy organizations and condition-specific communities unduly coerce potential participants?”

Approximately 30 organizations will participate in this research. Genetic Alliance will select these groups through a request for proposals.

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