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

Amy L. McGuire; Mary A. Majumder; Angela G. Villanueva; Jessica Bardill; Juli M. Bollinger; Eric Boerwinkle; Tania Bubela; Patricia A. Deverka; Barbara J. Evans; Nanibaa' A. Garrison; David Glazer; Melissa M. Goldstein; Henry T. Greely; Scott D. Kahn; Bartha M. Knoppers; Barbara A. Koenig; J. Mark Lambright; John E. Mattison; Christopher O'Donnell; Arti K. Rai; Laura L. Rodriguez; Tania Simoncelli; Sharon F. Terry; Adrian M. Thorogood; Michael S. Watson; John T. Wilbanks; Robert Cook-Deegan

doi:10.1177/1073110519840480

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

Amy L. McGuire, Mary A. Majumder, Angela G. Villanueva, Jessica Bardill, Juli M. Bollinger, Eric Boerwinkle, Tania Bubela, Patricia A. Deverka, Barbara J. Evans, Nanibaa' A. Garrison, David Glazer, Melissa M. Goldstein, Henry T. Greely, Scott D. Kahn, Bartha M. Knoppers, Barbara A. Koenig, J. Mark Lambright, John E. Mattison, Christopher O'Donnell, Arti K. RaiLaura L. Rodriguez, Tania Simoncelli, Sharon F. Terry, Adrian M. Thorogood, Michael S. Watson, John T. Wilbanks, Robert Cook-Deegan

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Abstract

Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons (MIC). We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.

Original language	English (US)
Pages (from-to)	12-20
Number of pages	9
Journal	Journal of Law, Medicine and Ethics
Volume	47
Issue number	1
DOIs	https://doi.org/10.1177/1073110519840480
Publication status	Published - 1 Mar 2019

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McGuire, A. L., Majumder, M. A., Villanueva, A. G., Bardill, J., Bollinger, J. M., Boerwinkle, E., Bubela, T., Deverka, P. A., Evans, B. J., Garrison, N. A., Glazer, D., Goldstein, M. M., Greely, H. T., Kahn, S. D., Knoppers, B. M., Koenig, B. A., Lambright, J. M., Mattison, J. E., O'Donnell, C., ... Cook-Deegan, R. (2019). Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons. Journal of Law, Medicine and Ethics, 47(1), 12-20. https://doi.org/10.1177/1073110519840480

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abstract = "Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons (MIC). We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.",

author = "McGuire, \{Amy L.\} and Majumder, \{Mary A.\} and Villanueva, \{Angela G.\} and Jessica Bardill and Bollinger, \{Juli M.\} and Eric Boerwinkle and Tania Bubela and Deverka, \{Patricia A.\} and Evans, \{Barbara J.\} and Garrison, \{Nanibaa' A.\} and David Glazer and Goldstein, \{Melissa M.\} and Greely, \{Henry T.\} and Kahn, \{Scott D.\} and Knoppers, \{Bartha M.\} and Koenig, \{Barbara A.\} and Lambright, \{J. Mark\} and Mattison, \{John E.\} and Christopher O'Donnell and Rai, \{Arti K.\} and Rodriguez, \{Laura L.\} and Tania Simoncelli and Terry, \{Sharon F.\} and Thorogood, \{Adrian M.\} and Watson, \{Michael S.\} and Wilbanks, \{John T.\} and Robert Cook-Deegan",

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doi = "10.1177/1073110519840480",

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McGuire, AL, Majumder, MA, Villanueva, AG, Bardill, J, Bollinger, JM, Boerwinkle, E, Bubela, T, Deverka, PA, Evans, BJ, Garrison, NA, Glazer, D, Goldstein, MM, Greely, HT, Kahn, SD, Knoppers, BM, Koenig, BA, Lambright, JM, Mattison, JE, O'Donnell, C, Rai, AK, Rodriguez, LL, Simoncelli, T, Terry, SF, Thorogood, AM, Watson, MS, Wilbanks, JT & Cook-Deegan, R 2019, 'Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons', Journal of Law, Medicine and Ethics, vol. 47, no. 1, pp. 12-20. https://doi.org/10.1177/1073110519840480

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AU - McGuire, Amy L.

AU - Majumder, Mary A.

AU - Villanueva, Angela G.

AU - Bardill, Jessica

AU - Bollinger, Juli M.

AU - Boerwinkle, Eric

AU - Bubela, Tania

AU - Deverka, Patricia A.

AU - Evans, Barbara J.

AU - Garrison, Nanibaa' A.

AU - Glazer, David

AU - Goldstein, Melissa M.

AU - Greely, Henry T.

AU - Kahn, Scott D.

AU - Knoppers, Bartha M.

AU - Koenig, Barbara A.

AU - Lambright, J. Mark

AU - Mattison, John E.

AU - O'Donnell, Christopher

AU - Rai, Arti K.

AU - Rodriguez, Laura L.

AU - Simoncelli, Tania

AU - Terry, Sharon F.

AU - Thorogood, Adrian M.

AU - Watson, Michael S.

AU - Wilbanks, John T.

AU - Cook-Deegan, Robert

PY - 2019/3/1

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AB - Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons (MIC). We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.

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

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