Data Stewardship in Electronic Medical Records and the Policy Challenges for Research Programs: A Canadian Perspective
Date
2013-04-29
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Abstract
Research access to personal health information presents a challenge to policy makers and researchers alike. It is usually framed as a conflict between data access for the benefit of society and the protection of privacy. This thesis examines the policy challenge by studying the data access policies of several organizations that are affiliated with academic institutions and provide research access to personal health information. By applying a policy ethics framework that combines the Veatch matrix and the Accountability for Reasonableness conditions of Daniels and Sabin the data access policies reveal an ethically justifiable resolution of the policy challenge. A case study conducted on one of the organizations yields a policy model that interviewees report, worked well in practice in the years 1996 to 2002. The policy options that emerged from the model could be adapted for use in any jurisdiction whose legal regime is similar to that of Canada’s provinces and territories.
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Public Administration
Citation
Dong, A. (2013). Data Stewardship in Electronic Medical Records and the Policy Challenges for Research Programs: A Canadian Perspective (Master's thesis, University of Calgary, Calgary, Canada). Retrieved from https://prism.ucalgary.ca. doi:10.11575/PRISM/25521