What is a Medical Information Commons?

Abstract

A 2011 National Academies of Sciences report called for an “Information Commons” and a “Knowledge Network” to revolutionize biomedical research and clinical care. We interviewed 41 expert stakeholders to examine governance, access, data collection, and privacy in the context of a medical information commons. Stakeholders' attitudes about MICs align with the NAS vision of an Information Commons; however, differences of opinion regarding clinical use and access warrant further research to explore policy and technological solutions.

The National Cancer Institute Cancer Moonshot Public Access and Data Sharing Policy—Initial assessment and implications

“…In 2013, seeking to extend the benefits of scientific data sharing to the full range of nondefense federally funded research, the Office of Management and Budget (OMB) enacted a sweeping Open Data Policy that required federal agencies to make most government-funded data available in accessible, modifiable and searchable formats, while taking into account individual privacy, confidentiality and security considerations (Office of Management and Budget (OMB), 2013). Initiatives such as these are aimed at the eventual development of an integrated "medical information commons" that will enable broad data use and analysis in the diagnosis of disease, the search for cures and the improved understanding of human biology (Bollinger et al, 2019).…”

“…The need for training is urgent, both with respect to potential grant applicants and also the many program officers throughout NIH who will be expected to explain and manage these new policies. These points will become particularly important as data sharing requirements move from the relatively circumscribed realm of genomics and related fields to the vast array of health science disciplines covered by NIH-funded research with the eventual goal of forming an integrated "medical information commons" (Bollinger et al, 2019). For researchers in these disciplines, the aggressive data sharing precepts that originated with the HGP may be both unfamiliar and counterintuitive, and significant acculturation may be required in order to ensure the successful implementation of these data sharing practices across the scientific community.…”

Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons

“…laboratory, academia, non-government organization, government, technology, and healthcare company) also emphasized the important role of participants in governance. 29 A few talked about this at some length, reporting dissatisfaction with the way that community representation on institutional review boards has worked out in practice and cautioning against tokenism. Some stressed the importance of giving participants a voice in choosing their representatives, for example via some kind of election process.…”

Who Owns the Data in a Medical Information Commons?

“…A description of the sampling approach and data collection methods are described elsewhere. 18 Interviews were conducted with 41 expert stakeholders (10 of whom have a law background) from several employment sectors that may be involved with the development of an MIC or work on matters This article considers data ownership in the context of a medical information commons (MIC). The paradigmatic example of a commons in legal scholarship is the medieval village green used for grazing cattle.…”