SCHOOL OF INFORMATION UNIVERSITY OF MICHIGAN Biomedical Informatics Research Network’s Governance of their Data Federation Efforts. A case exploring our major themes Judith S. Olson Mary Puetz Airong Luo

SCHOOL OF INFORMATION UNIVERSITY OF MICHIGAN Our Case Biomedical Informatics Research Network (BIRN) – $30M from NIH Three related projects plus an oversight technical group “Learning by doing” Involving 256 Scientists and Support People from 14 institutions in the US – Coordinated development with sharing lessons learned

SCHOOL OF INFORMATION UNIVERSITY OF MICHIGAN Our Case Three related collaboratories involving science that would benefit from sharing data on brain images – Function BIRN – Morphometry BIRN – Mouse BIRN

SCHOOL OF INFORMATION UNIVERSITY OF MICHIGAN Four major findings from this case Scientific and Information Management Technical Social Organizational

SCHOOL OF INFORMATION UNIVERSITY OF MICHIGAN Findings about the Science and Information Management Difficulties in achieving common ground – Have to speak the others’ language when crossing science boundaries Molecular level to morphometry to functional Even maps of the brain differ in terminology Solution: Developing the Rosetta Stone Thesaurus about what regions of the brain might be called – Both a technical and social issue

SCHOOL OF INFORMATION UNIVERSITY OF MICHIGAN Findings about the Science and Information Management Application to settings outside of science – Explicitly seek common ground across disciplines or areas Research and Development Development and Manufacturing Mergers and Acquisitions Lawyers with anybody

SCHOOL OF INFORMATION UNIVERSITY OF MICHIGAN Findings about Technical Issues Difficulties in that distributed sites have different infrastructure Solution: – Standardized “racks” shipped to the locations (“BIRN in a box”) Difficulties in that local databases developed their own format Solution: – Federated as opposed to centralized databases – Resource Manager finds and aggregates relevant data

SCHOOL OF INFORMATION UNIVERSITY OF MICHIGAN Findings about Technical Issues Application to settings outside of science – Help people achieve a common infrastructure “IT in a box” – Federation of databases allows individual databases to grow May be more flexible than centralized resources

SCHOOL OF INFORMATION UNIVERSITY OF MICHIGAN Findings about the Social Issues Difficulties in motivation to share – Credit assignment Solution: – Giving credit and responsibility where they are due Authorship guidelines – Do data contributors get authorship? – No, but the BIRN collective gets credit – You can’t get data out unless your team contributes

SCHOOL OF INFORMATION UNIVERSITY OF MICHIGAN Findings about the Social Issues Difficulties in ownership and sharing – Worry about being “scooped” Solution: – Originator owns for first year – Gives permission to trusted others – Opens to BIRN collective – Opens to public

SCHOOL OF INFORMATION UNIVERSITY OF MICHIGAN Findings about the Social Issues Application to settings outside of science – Create explicit rewards for sharing – Address the issue of ownership Create rollout of ideas to wider audience Allow creator to reap the benefits first this applies to cross industry or supply chain cooperation in particular

SCHOOL OF INFORMATION UNIVERSITY OF MICHIGAN Findings about Organizational Issues Difficulties in knowing what to do – These are massive projects with little precedent Solution: – Share solutions to common problems E.g. Institutional Review Boards – template E.g. Tutorials E.g. Standards (tasks for Functional MRI) – Overall governing body made up of members of each set of contributors

SCHOOL OF INFORMATION UNIVERSITY OF MICHIGAN Findings about Organizational Issues Application to settings outside of science – Be a learning organization – Participate in relative roundtables – Find ways to extend (test?) your learnings to others

SCHOOL OF INFORMATION UNIVERSITY OF MICHIGAN How do these relate to settings outside of science? Science and Information Management – Achieving common ground Technical Issues – Help people have the common infrastructure (… in a Box) – Federate instead of centralize Social Issues – Create explicit rewards for contributions – Roll out ownership to prevent scooping – Create balanced Governing Board Organizational Issues – Be a learning organization – Find ways to extend what you are learning to others