Essential requirements for the governance and management of data trusts, data repositories, and other data collaborations
Introduction Around the world, many organisations are working on ways to increase the use, sharing, and reuse of person-level data for research, evaluation, planning, and innovation while ensuring that data are secure and privacy is protected. As a contribution to broader efforts to improve data go...
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| Format: | Article |
| Language: | English |
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Swansea University
2023-09-01
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| Series: | International Journal of Population Data Science |
| Subjects: | |
| Online Access: | https://ijpds.org/article/view/2142 |
| _version_ | 1797417885138681856 |
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| author | P Alison Paprica Monique Crichlow Donna Curtis Maillet Sarah Kesselring Conrad Pow Thomas P. Scarnecchia Michael J. Schull Rosario G. Cartagena Annabelle Cumyn Salman Dostmohammad Keith O. Elliston Michelle Greiver Amy Hawn Nelson Sean L. Hill Wanrudee Isaranuwatchai Evgueni Loukipoudis James Ted McDonald John R. McLaughlin Alan Rabinowitz Fahad Razak Stefaan G. Verhulst Amol A. Verma J. Charles Victor Andrew Young Joanna Yu Kimberlyn McGrail |
| author_facet | P Alison Paprica Monique Crichlow Donna Curtis Maillet Sarah Kesselring Conrad Pow Thomas P. Scarnecchia Michael J. Schull Rosario G. Cartagena Annabelle Cumyn Salman Dostmohammad Keith O. Elliston Michelle Greiver Amy Hawn Nelson Sean L. Hill Wanrudee Isaranuwatchai Evgueni Loukipoudis James Ted McDonald John R. McLaughlin Alan Rabinowitz Fahad Razak Stefaan G. Verhulst Amol A. Verma J. Charles Victor Andrew Young Joanna Yu Kimberlyn McGrail |
| author_sort | P Alison Paprica |
| collection | DOAJ |
| description |
Introduction
Around the world, many organisations are working on ways to increase the use, sharing, and reuse of person-level data for research, evaluation, planning, and innovation while ensuring that data are secure and privacy is protected. As a contribution to broader efforts to improve data governance and management, in 2020 members of our team published 12 minimum specification essential requirements (min specs) to provide practical guidance for organisations establishing or operating data trusts and other forms of data infrastructure.
Approach and Aims
We convened an international team, consisting mostly of participants from Canada and the United States of America, to test and refine the original 12 min specs. Twenty-three (23) data-focused organisations and initiatives recorded the various ways they address the min specs. Sub-teams analysed the results, used the findings to make improvements to the min specs, and identified materials to support organisations/initiatives in addressing the min specs.
Results
Analyses and discussion led to an updated set of 15 min specs covering five categories: one min spec for Legal, five for Governance, four for Management, two for Data Users, and three for Stakeholder & Public Engagement. Multiple changes were made to make the min specs language more technically complete and precise. The updated set of 15 min specs has been integrated into a Canadian national standard that, to our knowledge, is the first to include requirements for public engagement and Indigenous Data Sovereignty.
Conclusions
The testing and refinement of the min specs led to significant additions and improvements. The min specs helped the 23 organisations/initiatives involved in this project communicate and compare how they achieve responsible and trustworthy data governance and management. By extension, the min specs, and the Canadian national standard based on them, are likely to be useful for other data-focused organisations and initiatives.
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| first_indexed | 2024-03-09T06:24:58Z |
| format | Article |
| id | doaj.art-940b2c3308a8427586a6aa4c7e236fc9 |
| institution | Directory Open Access Journal |
| issn | 2399-4908 |
| language | English |
| last_indexed | 2024-03-09T06:24:58Z |
| publishDate | 2023-09-01 |
| publisher | Swansea University |
| record_format | Article |
| series | International Journal of Population Data Science |
| spelling | doaj.art-940b2c3308a8427586a6aa4c7e236fc92023-12-03T11:22:10ZengSwansea UniversityInternational Journal of Population Data Science2399-49082023-09-018410.23889/ijpds.v8i4.2142Essential requirements for the governance and management of data trusts, data repositories, and other data collaborationsP Alison Paprica0https://orcid.org/0000-0001-6362-7087Monique Crichlow1Donna Curtis Maillet2Sarah Kesselring3Conrad Pow4Thomas P. Scarnecchia5Michael J. Schull6Rosario G. Cartagena 7Annabelle Cumyn8Salman Dostmohammad9Keith O. Elliston10Michelle Greiver11Amy Hawn Nelson12Sean L. Hill13Wanrudee Isaranuwatchai14Evgueni Loukipoudis15James Ted McDonald16John R. McLaughlin17Alan Rabinowitz18Fahad Razak19Stefaan G. Verhulst20Amol A. Verma21J. Charles Victor22Andrew Young23Joanna Yu24Kimberlyn McGrail25Institute for Clinical Evaluative Sciences (ICES), Toronto, Ontario, M4N 3M5; Institute of Health Policy, Management & Evaluation, University of Toronto, Toronto, Ontario, M4N 3M5; Vector Institute, Toronto, Ontario, M5G 1M1 Indoc Research, Toronto, Ontario, M5H 3W4New Brunswick Institute for Research, Data and Training (NB-IRDT), University of New Brunswick, Fredericton, New Brunswick, E3A 5A3Health Data Research Network Canada, Vancouver, British Columbia, V6T 1Z3Diabetes Action Canada, Toronto, Ontario, M5G 2C4Digital Aurora, Inc., Manchester, Vermont 05254Institute for Clinical Evaluative Sciences (ICES), Toronto, Ontario, M4N 3M5; Department of Emergency Services, Sunnybrook Health Sciences Centre, Toronto, Ontario, M4N 3M5Institute for Clinical Evaluative Sciences (ICES), Toronto, Ontario, M4N 3M5Université de Sherbrooke, Sherbrooke, Québec, J1K 2R1Public Health Agency of Canada, Ottawa, Ontario, K1A 0K9Seneca Creek Research, 209 Burlington Road, Suite 207, Bedford MA, 01730, USA (formerly affiliated with PHEMI)North York General Hospital, Toronto, Ontario, M2K 1E1; Department of Family and Community Medicine, Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, M4N 3M5University of Pennsylvania, Philadelphia, Pennsylvania, 19104Krembil Centre for Neuroinformatics, Centre for Addiction and Mental Health (CAMH), Toronto, Ontario, M5T 1R8Health Intervention and Technology Assessment Program (HITAP), Ministry of Public Health (Thailand), Daongmane, Mueang Nonthaburi District, Nonthaburi 11000, Thailand; Institute of Health Policy, Management and Evaluation (IHPME), University of Toronto, Toronto, Ontario, M5T 3M6; Knowledge Translation Program, St. Michael's Hospital, Toronto, Ontario, M5B 1W8Catalyx Tecnologies Inc., Vancouver, British Columbia, V6Z 3A4New Brunswick Institute for Research, Data and Training (NB-IRDT), University of New Brunswick, Fredericton, New Brunswick, E3A 5A3; Department of Political Science, University of New Brunswick, Fredericton, New Brunswick, E3B 5A3Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, M5T 3M7St Paul's Hospital, Vancouver. British Columbia, V6Z 1Y6Li Ka Shing Knowledge Institute, St Michael's Hospital, Toronto, Ontario, M5B 1T8; Department of Medicine, University of Toronto, Toronto, Ontario, M5S 3H2The GovLab, New York University Tandon School of Engineering, Brooklyn, New York, 11201St. Michael's Hospital, Toronto, Ontario, M5C 3G7; Department of Medicine, University of Toronto, Toronto, Ontario, M5S 3H2; Institute of Health Policy Management and Evaluation, University of Toronto, Toronto, Ontario, M4N 3M5ICES, Toronto, Ontario, M4N 3M5; Institute of Health Policy, Management & Evaluation, University of Toronto, Toronto, Ontario, M4N 3M5The GovLab, New York University Tandon School of Engineering, Brooklyn, New York, 11201Krembil Centre for Neuroinformatics, Centre for Addiction and Mental Health (CAMH), Toronto, Ontario, M5T 1R8Population Data BC, University of British Columbia, Vancouver, British Columbia, V6T 1Z3; Centre for Health Services and Policy Research, School of Population and Public Health, University of British Columbia, Vancouver, British Columbia, V6T 1Z3; Health Data Research Network Canada, Vancouver, BC, V6T 1Z3 Introduction Around the world, many organisations are working on ways to increase the use, sharing, and reuse of person-level data for research, evaluation, planning, and innovation while ensuring that data are secure and privacy is protected. As a contribution to broader efforts to improve data governance and management, in 2020 members of our team published 12 minimum specification essential requirements (min specs) to provide practical guidance for organisations establishing or operating data trusts and other forms of data infrastructure. Approach and Aims We convened an international team, consisting mostly of participants from Canada and the United States of America, to test and refine the original 12 min specs. Twenty-three (23) data-focused organisations and initiatives recorded the various ways they address the min specs. Sub-teams analysed the results, used the findings to make improvements to the min specs, and identified materials to support organisations/initiatives in addressing the min specs. Results Analyses and discussion led to an updated set of 15 min specs covering five categories: one min spec for Legal, five for Governance, four for Management, two for Data Users, and three for Stakeholder & Public Engagement. Multiple changes were made to make the min specs language more technically complete and precise. The updated set of 15 min specs has been integrated into a Canadian national standard that, to our knowledge, is the first to include requirements for public engagement and Indigenous Data Sovereignty. Conclusions The testing and refinement of the min specs led to significant additions and improvements. The min specs helped the 23 organisations/initiatives involved in this project communicate and compare how they achieve responsible and trustworthy data governance and management. By extension, the min specs, and the Canadian national standard based on them, are likely to be useful for other data-focused organisations and initiatives. https://ijpds.org/article/view/2142data governancedata managementstandardspublic engagementIndigenous Data Sovereigntydata trust |
| spellingShingle | P Alison Paprica Monique Crichlow Donna Curtis Maillet Sarah Kesselring Conrad Pow Thomas P. Scarnecchia Michael J. Schull Rosario G. Cartagena Annabelle Cumyn Salman Dostmohammad Keith O. Elliston Michelle Greiver Amy Hawn Nelson Sean L. Hill Wanrudee Isaranuwatchai Evgueni Loukipoudis James Ted McDonald John R. McLaughlin Alan Rabinowitz Fahad Razak Stefaan G. Verhulst Amol A. Verma J. Charles Victor Andrew Young Joanna Yu Kimberlyn McGrail Essential requirements for the governance and management of data trusts, data repositories, and other data collaborations International Journal of Population Data Science data governance data management standards public engagement Indigenous Data Sovereignty data trust |
| title | Essential requirements for the governance and management of data trusts, data repositories, and other data collaborations |
| title_full | Essential requirements for the governance and management of data trusts, data repositories, and other data collaborations |
| title_fullStr | Essential requirements for the governance and management of data trusts, data repositories, and other data collaborations |
| title_full_unstemmed | Essential requirements for the governance and management of data trusts, data repositories, and other data collaborations |
| title_short | Essential requirements for the governance and management of data trusts, data repositories, and other data collaborations |
| title_sort | essential requirements for the governance and management of data trusts data repositories and other data collaborations |
| topic | data governance data management standards public engagement Indigenous Data Sovereignty data trust |
| url | https://ijpds.org/article/view/2142 |
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