Infrastructuring an organizational node for a federated research and data network: A case study from a sociotechnical perspective

Abstract Background: Local nodes on federated research and data networks (FR&DNs) provide enabling infrastructure for collaborative clinical and translational research. Studies in other fields note that infrastructuring, that is, work to identify and negotiate relationships among people, technologies, and organizations, is invisible, unplanned, and undervalued. This may explain the limited literature on nodes in FR&DNs in health care. Methods: A retrospective case study of one PCORnet® node explored 3 questions: (1) how were components of infrastructure assembled; (2) what specific work was required; and (3) what theoretically grounded, pragmatic questions should be considered when infrastructuring a node for sustainability. Artifacts, work efforts, and interviews generated during node development and implementation were reviewed. A sociotechnical lens was applied to the analysis. Validity was established with internal and external partners. Results: Resources, services, and expertise needed to establish the node existed within the organization, but were scattered across work units. Aligning, mediating, and institutionalizing for sustainability among network and organizational teams, governance, and priorities consumed more work efforts than deploying technical aspects of the node. A theoretically based set of questions relevant to infrastructuring a node was developed and organized within a framework of infrastructuring emphasizing enacting technology, organizing work, and institutionalizing; validity was established with internal and external partners. Conclusions: FR&DNs are expanding; we provide a sociotechnical perspective on infrastructuring a node. Future research should evaluate the applicability of the framework and questions to other node and network configurations, and more broadly the infrastructuring required to enable and support federated clinical and translational science.

[2]  David Levine,et al.  CAPriCORN: Chicago Area Patient-Centered Outcomes Research Network , 2014, J. Am. Medical Informatics Assoc..

[3]  Stéphane Goldstein.  The Evolving Landscape Of Federated Research Data Infrastructures , 2017 .

[4]  Richard Platt,et al.  Launching PCORnet, a national patient-centered clinical research network , 2014, Journal of the American Medical Informatics Association : JAMIA.

[5]  Anjum Khurshid,et al.  Louisiana Clinical Data Research Network: establishing an infrastructure for efficient conduct of clinical research , 2014, J. Am. Medical Informatics Assoc..

[6]  Griffin M. Weber.  Federated queries of clinical data repositories: Scaling to a national network , 2015, J. Biomed. Informatics.

[7]  Tony Hey,et al.  The Fourth Paradigm: Data-Intensive Scientific Discovery , 2009 .

[8]  Douglas MacFadden,et al.  SHRINE: Enabling Nationally Scalable Multi-Site Disease Studies , 2013, PloS one.

[9]  Geoffrey C. Bowker,et al.  An Afterword to ‘Infrastructuring and Collaborative Design’ , 2018, Computer Supported Cooperative Work (CSCW).

[10]  Isaac S Kohane,et al.  Federalist principles for healthcare data networks , 2015, Nature Biotechnology.

[11]  Umit Topaloglu,et al.  Using a Federated Network of Real-World Data to Optimize Clinical Trials Operations. , 2018, JCO clinical cancer informatics.

[12]  Michael J. Becich,et al.  PaTH: towards a learning health system in the Mid-Atlantic region , 2014, Journal of the American Medical Informatics Association : JAMIA.

[13]  Xiaobo Zhou,et al.  Scalable Collaborative Infrastructure for a Learning Healthcare System (SCILHS): Architecture , 2014, J. Am. Medical Informatics Assoc..

[14]  Paul A. Harris,et al.  The Mid-South Clinical Data Research Network , 2014, J. Am. Medical Informatics Assoc..

[15]  Prakash M. Nadkarni,et al.  The Greater Plains Collaborative: a PCORnet Clinical Research Data Network , 2014, J. Am. Medical Informatics Assoc..

[16]  Thomas A. Finholt,et al.  Tensions across the scales: planning infrastructure for the long-term , 2007, GROUP.

[17]  Richard Platt,et al.  The FDA Sentinel Initiative - An Evolving National Resource. , 2018, The New England journal of medicine.

[18]  Keith Marsolo,et al.  The Genomics Research and Innovation Network: creating an interoperable, federated, genomics learning system , 2019, Genetics in Medicine.

[19]  Charlotte P. Lee,et al.  Sustaining the development of cyberinfrastructure: an organization adapting to change , 2012, CSCW.

[20]  Karen Ruhleder,et al.  Steps Toward an Ecology of Infrastructure: Design and Access for Large Information Spaces , 1996, Inf. Syst. Res..

[21]  Thomas A. Finholt,et al.  The Long Now of Infrastructure: Articulating Tensions in Development , 2009 .

[22]  Rainu Kaushal,et al.  Changing the research landscape: the New York City Clinical Data Research Network , 2014, J. Am. Medical Informatics Assoc..

[23]  K. Baker,et al.  Toward Information Infrastructure Studies: Ways of Knowing in a Networked Environment , 2009 .

[24]  Arthur J. Davidson,et al.  Clinical research data warehouse governance for distributed research networks in the USA: a systematic review of the literature , 2014, J. Am. Medical Informatics Assoc..

[25]  Volker Wulf,et al.  Infrastructuring: Toward an Integrated Perspective on the Design and Use of Information Technology , 2009, J. Assoc. Inf. Syst..

[26]  Miria Grisot,et al.  Re-Infrastructuring for eHealth: Dealing with Turns in Infrastructure Development , 2017, Computer Supported Cooperative Work (CSCW).

[27]  Michael G. Kahn,et al.  Developing a data infrastructure for a learning health system: the PORTAL network , 2014, J. Am. Medical Informatics Assoc..

[28]  Rachel Gold,et al.  The ADVANCE network: accelerating data value across a national community health center network , 2014, Journal of the American Medical Informatics Association : JAMIA.

[29]  Sarah M. Greene,et al.  Collaborating on Data, Science, and Infrastructure: The 20-Year Journey of the Cancer Research Network , 2019, EGEMS.

[30]  Keith Marsolo,et al.  PEDSnet: a National Pediatric Learning Health System , 2014, J. Am. Medical Informatics Assoc..

[31]  Melanie Davies,et al.  Software-Enabled Distributed Network Governance: The PopMedNet Experience , 2016, EGEMS.

[32]  Lucila Ohno-Machado,et al.  pSCANNER: patient-centered Scalable National Network for Effectiveness Research , 2014, J. Am. Medical Informatics Assoc..

[33]  S. Read.  Applications of Case Study Research , 2003 .