Literature DB >> 30994065

What is a Medical Information Commons?

Juli M Bollinger1, Peter D Zuk1, Mary A Majumder1, Erika Versalovic1, Angela G Villanueva1, Rebecca L Hsu1, Amy L McGuire1, Robert Cook-Deegan1.   

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.

Entities:  

Mesh：

Year:  2019        PMID： 30994065      PMCID： PMC6730652          DOI： 10.1177/1073110519840483

Source DB:  PubMed          Journal:  J Law Med Ethics        ISSN： 1073-1105            Impact factor:   1.718


  11 in total

1.  Bermuda rules: community spirit, with teeth.

Authors:  E Marshall
Journal:  Science       Date:  2001-02-16       Impact factor: 47.728

2.  The struggle to govern the commons.

Authors:  Thomas Dietz; Elinor Ostrom; Paul C Stern
Journal:  Science       Date:  2003-12-12       Impact factor: 47.728

3.  The Role of Participants in a Medical Information Commons.

Authors:  Mary A Majumder; Juli M Bollinger; Angela G Villanueva; Patricia A Deverka; Barbara A Koenig
Journal:  J Law Med Ethics       Date:  2019-03       Impact factor: 1.718

4.  DATA ACCESS. Sharing by design: Data and decentralized commons.

Authors:  Jorge L Contreras; Jerome H Reichman
Journal:  Science       Date:  2015-12-11       Impact factor: 47.728

Review 5.  Psychiatric Genomics: An Update and an Agenda.

Authors:  Patrick F Sullivan; Arpana Agrawal; Cynthia M Bulik; Ole A Andreassen; Anders D Børglum; Gerome Breen; Sven Cichon; Howard J Edenberg; Stephen V Faraone; Joel Gelernter; Carol A Mathews; Caroline M Nievergelt; Jordan W Smoller; Michael C O'Donovan
Journal:  Am J Psychiatry       Date:  2017-10-03       Impact factor: 18.112

Review 6.  Characterizing the Biomedical Data-Sharing Landscape.

Authors:  Angela G Villanueva; Robert Cook-Deegan; Barbara A Koenig; Patricia A Deverka; Erika Versalovic; Amy L McGuire; Mary A Majumder
Journal:  J Law Med Ethics       Date:  2019-03       Impact factor: 1.718

7.  Who Owns the Data in a Medical Information Commons?

Authors:  Amy L McGuire; Jessica Roberts; Sean Aas; Barbara J Evans
Journal:  J Law Med Ethics       Date:  2019-03       Impact factor: 1.718

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

Authors:  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
Journal:  J Law Med Ethics       Date:  2019-03       Impact factor: 1.718

9.  Creating a data resource: what will it take to build a medical information commons?

Authors:  Patricia A Deverka; Mary A Majumder; Angela G Villanueva; Margaret Anderson; Annette C Bakker; Jessica Bardill; Eric Boerwinkle; Tania Bubela; Barbara J Evans; Nanibaa' A Garrison; Richard A Gibbs; Robert Gentleman; David Glazer; Melissa M Goldstein; Hank Greely; Crane Harris; Bartha M Knoppers; Barbara A Koenig; Isaac S Kohane; Salvatore La Rosa; John Mattison; Christopher J O'Donnell; Arti K Rai; Heidi L Rehm; Laura L Rodriguez; Robert Shelton; Tania Simoncelli; Sharon F Terry; Michael S Watson; John Wilbanks; Robert Cook-Deegan; Amy L McGuire
Journal:  Genome Med       Date:  2017-09-22       Impact factor: 11.117

10.  The FAIR Guiding Principles for scientific data management and stewardship.

Authors:  Mark D Wilkinson; Michel Dumontier; I Jsbrand Jan Aalbersberg; Gabrielle Appleton; Myles Axton; Arie Baak; Niklas Blomberg; Jan-Willem Boiten; Luiz Bonino da Silva Santos; Philip E Bourne; Jildau Bouwman; Anthony J Brookes; Tim Clark; Mercè Crosas; Ingrid Dillo; Olivier Dumon; Scott Edmunds; Chris T Evelo; Richard Finkers; Alejandra Gonzalez-Beltran; Alasdair J G Gray; Paul Groth; Carole Goble; Jeffrey S Grethe; Jaap Heringa; Peter A C 't Hoen; Rob Hooft; Tobias Kuhn; Ruben Kok; Joost Kok; Scott J Lusher; Maryann E Martone; Albert Mons; Abel L Packer; Bengt Persson; Philippe Rocca-Serra; Marco Roos; Rene van Schaik; Susanna-Assunta Sansone; Erik Schultes; Thierry Sengstag; Ted Slater; George Strawn; Morris A Swertz; Mark Thompson; Johan van der Lei; Erik van Mulligen; Jan Velterop; Andra Waagmeester; Peter Wittenburg; Katherine Wolstencroft; Jun Zhao; Barend Mons
Journal:  Sci Data       Date:  2016-03-15       Impact factor: 6.444
View more
  4 in total

1.  The Role of Participants in a Medical Information Commons.

Authors:  Mary A Majumder; Juli M Bollinger; Angela G Villanueva; Patricia A Deverka; Barbara A Koenig
Journal:  J Law Med Ethics       Date:  2019-03       Impact factor: 1.718

2.  BRCA1/2 Variant Data-Sharing Practices.

Authors:  Juli M Bollinger; Abhi Sanka; Lena Dolman; Rachel G Liao; Robert Cook-Deegan
Journal:  J Law Med Ethics       Date:  2019-03       Impact factor: 1.718

3.  Who Owns the Data in a Medical Information Commons?

Authors:  Amy L McGuire; Jessica Roberts; Sean Aas; Barbara J Evans
Journal:  J Law Med Ethics       Date:  2019-03       Impact factor: 1.718

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

Authors:  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
Journal:  J Law Med Ethics       Date:  2019-03       Impact factor: 1.718
  4 in total

北京卡尤迪生物科技股份有限公司 © 2022-2023.