Data Collaborative Case Study by Michelle Winowatan, Andrew Young, and Stefaan Verhulst: “Accelerating Medicines Partnership (AMP) is a cross-sector data-sharing partnership in the United States between the National Institutes of Health (NIH), the Food and Drug Administration (FDA), multiple biopharmaceutical and life science companies, as well as non-profit organizations that seeks to improve the efficiency of developing new diagnostics and treatments for several types of disease. To achieve this goal, the partnership created a pre-competitive collaborative ecosystem where the biomedical community can pool data and resources that are relevant to the prioritized disease areas. A key component of the partnership is to make biomarkers data available to the medical research community through online portals.
Data Collaboratives Model: Based on our typology of data collaborative models, AMP is an example of the data pooling model of data collaboration, specifically a public data pool. Public data pools co-mingle data assets from multiple data holders — in this case pharmaceutical companies — and make those shared assets available on the web. Pools often limit contributions to approved partners (as public data pools are not crowdsourcing efforts), but access to the shared assets is open, enabling independent re-uses.
Data Stewardship Approach: Data stewardship is built into the partnership through the establishment of an executive committee, which governs the entire partnership, and a steering committee for each disease area, which governs each of the sub-projects within AMP. These committees consist of representatives from the institutional partners involved in AMP and perform data stewards function including enabling inter-institutional engagement as well as intra-institutional coordination, data audit and assessment of value and risk, communication of findings, and nurture the collaboration to sustainability….(Full Case Study)”.