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Journal of Law, Medicine & Ethics Journal of Law, Medicine & Ethics

Article contents

Medical Information Commons to Support Learning Healthcare Systems: Examples From Canada

Published online by Cambridge University Press:  01 January 2021

Tania Bubela ,
Shelagh K. Genuis ,
Naveed Z. Janjua ,
Mel Krajden ,
Nicole Mittmann ,
Katerina Podolak  and
Lawrence W. Svenson
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Abstract

We explore how principles predicting the success of a medical information commons (MIC) advantaged or disadvantaged three MIC initiatives in three Canadian provinces. Our MIC case examples demonstrate that practices and policies to promote access to and use of health information can help improve individual healthcare and inform a learning health system. MICs were constrained by heterogenous health information protection laws across jurisdictions and risk-averse institutional cultures. A networked approach to MICs would unlock even more potential for national and international data collaborations to improve health and healthcare.

Type
Symposium Articles
Information
Journal of Law, Medicine & Ethics , Volume 47 , Issue 1: Sharing Data in a Medical Information Commons , Spring 2019 , pp. 97 - 105
Copyright
Copyright © American Society of Law, Medicine and Ethics 2019

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References

Cook-Deegan, R. and McGuire, A.L., “Moving Beyond Bermuda: Sharing Data to Build a Medical Information Commons,” Genome Research 27, no. 6 (2017): 897–901; M.A. Majumder, P.D. Zuk, and A.L. McGuire, forthcoming, Medical Information Commons (Rochester, NY: Routledge, 2018) [hereinafter refd as Majumder]; National Research Council, Toward Precision Medicine: Building a Knowledge Network for Biomedical Research and a New Taxonomy of Disease, Consensus Study Report (Washington, DC: National Academies Press, 2011), available at <https://www.nap.edu/catalog/13284/toward-precision-medicine-building-a-knowledge-network-for-biomedical-research> (last visited September 14, 2018).CrossRefGoogle Scholar
Chambers, D. A., Feero, W. G., and Khoury, M. J., “Convergence of Implementation Science, Precision Medicine, and the Learning Health Care System: A New Model for Biomedical Research,” JAMA 315, no. 18 (2016): 1941–1942.CrossRefGoogle Scholar
See Majumder, supra note 1.Google Scholar
Deverka, P.A., Majumder, M.A., Villanueva, A.G., and Anderson, M. et al., “Creating a Data Resource: What Will It Take to Build a Medical Information Commons?” Genome Medicine 9, no. 84 (2017): 1-5, available at <https://genomemedicine.biomedcentral.com/articles/10.1186/s13073-017-0476-3> (last visited January 22, 2019).CrossRefGoogle Scholar
Hess, C. and Ostrom, E., “Introduction: An Overview of the Knowledge Commons,” in Hess, C. and Ostrom, E., eds., Understanding Knowledge as Commons: From Theory to Practice (Cambridge, MA: MIT Press, 2006): at 3–26; C. Hess and E. Ostrom, “A Framework for Analysing the Microbiological Commons,” International Social Science Journal 58, no. 188 (2006): 335–349.CrossRefGoogle Scholar
Frischmann, B.M., Madison, M.J., and Strandburg, K.J., “Governing Research Commons,” in Frischmann, B.M., Madison, M.J., and Strandburg, K.J., eds., Governing Knowledge Commons (Oxford, UK: Oxford University Press, 2014): at 1–44; T. Bubela, R. Adams, and S. Chandrasekharan et al., “Governance of Biomedical Research Commons to Advance Clinical Translation: Lessons from the Mouse Model Community,” in K. J. Strandburg, B.M. Frischmann, and M.J. Madison, eds., Governing Medical Knowledge Commons (Cambridge, UK: Cambridge University Press, 2017): at 222–258 [hereinafter refd as Bubela].Google Scholar
Ostrom, E., Understanding Institutional Diversity (Princeton, NJ: Princeton University Press, 2005).Google Scholar
See Bubela, supra note 6.Google Scholar
Auffray, C., Balling, R., and Barroso, I. et al., “Making Sense of Big Data in Health Research: Towards an EU Action Plan,” Genome Medicine 8, no. 1 (2016): 71; V. Patel, J. Henry, and Y. Pylypchuk et al., “Interoperability Among U.S. Non-federal Acute Care Hospitals in 2015,” ONC Data Brief 36, May 2016, available at <https://dashboard.healthit.gov/evaluations/data-briefs/non-federal-acute-care-hospital-interoperability-2015.php> (last visited October 29, 2018); J. Manyika, M. Chui, and B. Brown et al., Big Data: The Next Frontier for Innovation, Competition, and Productivity, McKinsey Global Institute Report, May 2011, available at <https://www.mckinsey.com/business-functions/digital-mckinsey/our-insights/big-data-the-next-frontier-for-innovation> (last visited October 29, 2018).CrossRefGoogle Scholar
Mandl, K.D. and Kohane, I.S., “Federalist Principles for Federated Healthcare Data Networks,” Nature Biotechnology 33, no. 4 (2015): 360–363 [hereinafter refd as Mandl].CrossRefGoogle Scholar
See Mandl, supra note 10, at 363.Google Scholar
Council of Canadian Academies, Accessing Health and Health Related Data: The Expert Panel on Timely Access to Health and Social Data for Health Research and Health System Innovation (Ottawa, Ontario: Council of Canadian Academies, 2015), available at <http://www.scienceadvice.ca/uploads/eng/assessments%20and%20publications%20and%20news%20releases/health-data/healthdatafullreporten.pdf> [hereinafter refd as Council of Canadian Academies] (last visited September 14, 2018); P. Kosseim and M. Brady, “Policy by Procrastination: Secondary Use of Electronic Health Records for Health Research Purposes,” McGill Journal of Law and Health 2, no. 1 (2008): 415–446.+[hereinafter+cited+as+Council+of+Canadian+Academies]+(last+visited+September+14,+2018);+P.+Kosseim+and+M.+Brady,+“Policy+by+Procrastination:+Secondary+Use+of+Electronic+Health+Records+for+Health+Research+Purposes,”+McGill+Journal+of+Law+and+Health+2,+no.+1+(2008):+415–446.>Google Scholar
The Constitution Act, 1867, 30 & 31 Vict, c 3.Google Scholar
Gibson, E., “Health Information: Confidentiality and Access,” in Downie, J. G., Caulfield, T. A., and Flood, C. M., eds., Canadian Health Law and Policy (Markham, Ontario: LexisNexis Canada, 2011): at 253–293.Google Scholar
Canada Health Act, RSC 1985, c C-6.Google Scholar
See Council of Canadian Academies, supra note 12.Google Scholar
See Mandl, supra note 10; Productivity Commission, Australian Government, Data Availability and Use: Overview & Recommendations, Report No. 82, March 31, 2017, available at <https://www.pc.gov.au/inquiries/completed/data-access/report/data-access-overview.pdf> (last visited September 15, 2018).+(last+visited+September+15,+2018).>Google Scholar
See Council of Canadian Academies, supra note 12, at 100-1.Google Scholar
See Council of Canadian Academies, supra note 12, at 146.Google Scholar
See Council of Canadian Academies, supra note 12, at 104.Google Scholar
Janjua, N. Z., Kuo, M., and Chong, M. et al., “Assessing Hepatitis C Burden and Treatment Effectiveness through the British Columbia Hepatitis Testers Cohort (BC-HTC): Design and Characteristics of Linked and Unlinked Participants,” PLOS ONE 11, no. 3 (2016): e0150176 [hereinafter refd as Janjua].CrossRefGoogle Scholar
See Janjua, supra note 21.Google Scholar
Singer, M., Bulled, N., and Ostrach, B. et al., “Syndemics and the Biosocial Conception of Health,” The Lancet 389, no. 10072 (2017): 941-950.CrossRefGoogle Scholar
Butt, Z. A., Shrestha, N., and Wong, S., et al., “A Syndemic Approach to Assess the Effect of Substance Use and Social Disparities on the Evolution of HIV/HCV Infections in British Columbia,” PLOS ONE 12, no. 8 (2017): e0183609; N. Z. Janjua, M. Kuo, and A. Yu et al., “The Population Level Cascade of Care for Hepatitis C in British Columbia, Canada: The BC Hepatitis Testers Cohort (BC-HTC),” EBioMedicine 12 (2016): 189–195.CrossRefGoogle Scholar
Alavi, M., Janjua, N.Z., and Chong, M. et al., “The Contribution of Alcohol Use Disorder to Decompensated Cirrhosis among People with Hepatitis C: An International Study,” Journal of Hepatology 68, no. 3 (2018): 393–401; M. Alavi, N.Z. Janjua, and M. Chong et al., “Trends in Hepatocellular Carcinoma Incidence and Survival among People with Hepatitis C: An International Study,” Journal of Viral Hepatitis 25, no. 5 (2018): 473–481.CrossRefGoogle Scholar
Coiera, E., “The Forgetting Health System,” Learning Health Systems 1, no. 4 (2017): e10023; R. Tamblyn, M. McMahon, and J. Nadigel et al., “Transformation through Research Innovation,” HealthcarePapers 16, Special Issue (2016): 8–19.CrossRefGoogle Scholar
Health Information Act, RSA 2000, c H-5; Freedom of Information and Protection of Privacy Act, RSA 2000, c F-25.Google Scholar
L. Svenson, Data Issues in Precision Health, presentation at Data Access / Data Integration for Precision Health Workshop, Calgary, Alberta, Canada, October 25-26, 2017.Google Scholar
Cancer Care Ontario, “Who We Are,” available at <https://archive.cancercare.on.ca/about/who> (last visited September 15, 2018).+(last+visited+September+15,+2018).>Google Scholar
Cancer Act, RSO 1990, c C.1, available at <http://canlii.ca/t/532d3> (last visited January 22, 2019).+(last+visited+January+22,+2019).>Google Scholar
See Council of Canadian Academies, supra note 12, at 100-102Google Scholar
Personal Health Information Protection Act, 2004, SO 2004, c 3, Sch A.Google Scholar

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