The purpose of the Medical Information Commons project is to engage expert stakeholders to inform policy decisions about effective governance for data sharing and obtain informed public input to ensure that the values, rights, and interests of individuals whose data may populate the information commons are represented. AIR is supporting Baylor College of Medicine to achieve the following objectives: to identify and understand existing models for collecting diverse sources of data into a medical information commons for large-scale research and clinical application (Aim 1); to evaluate existing models and develop new approaches to address key policy issues with expert stakeholder input (Aim 2); and, to solicit public input on existing models and innovative approaches from individuals whose data may populate a medical information commons (Aim 3). The goal of this work is to provide the necessary foundation for a sustainable ethical and legal framework for efforts to advance public and private sector precision medicine initiatives.
In order to engage expert stakeholders and use deliberative methods to obtain informed public consent, we will begin with a systematic landscape analysis to identify and understand both international and US-based data initiatives that currently exist (Aim 1). The AIR team will work with the Advisory Committee members to synthesize results from the landscape analysis (literature review, stakeholder interviews) to develop materials for the Citizens™ Panels. In Aim 2, we will ask expert stakeholders to evaluate the effectiveness of these existing/emerging models and explore innovative approaches to address unresolved issues and policy gaps. The AIR team will develop materials and conduct cognitive testing of materials, as well as enroll participants for Citizens™ Panels at three sites. In Aim 3, we will present these integrated analyses of governance models to the public in the Citizens™ Panels to understand stakeholder views. Finally, AIR will perform quantitative and qualitative analyses to produce a report summary of key findings that will inform future policy development.
More informantion on this project can be found here.