Canadian Institutes of Health Research, Heart and Stroke Foundation of Canada, Ontario Ministry of Health and Long-Term Care, Ontario Ministry of Research, Innovation and Science, UK National Institute of Academic Anaesthesia, UK Clinical Research Collaboration, Australian and New Zealand College of Anaesthetists, and Monash University.
Based on administrative data, the risk of cardiovascular disease was unchanged in the first decade after kidney donation. The observed increase in diagnosed hypertension may be due to nephrectomy or more blood pressure measurements received by donors in follow-up and requires prospective study.
round the world, specialized research centres have developed expertise related to the linkage and analysis of population-wide administrative health data. 1 Canadian examples include ICES in Ontario, 2 the Manitoba Centre for Health Policy, 3 Population Data BC 4 and the Canadian Institute for Health Information. 5 These organizations all work with data sets that are created by linking person-level data from different data sets (e.g., prescription drugs, hospital admissions, mortality) then removing or coding identifying information so that research and analyses can be performed while protecting privacy. Recent high-profile reports and initiatives 6-8 highlight the potential benefits that could be realized by increasing linkage of, and access to, Canadian health data from these centres and other sites. At the same time, substantial public debate has been generated about questionable practices related to health data, including concerns about private sector access to data under care.data in the United Kingdom 9 and concerns about privacy and patient consent for My Health Record in Australia. 10 As stewards of health data that cover the entire population, it is the responsibility of organizations like ICES to engage with the public when considering expanded uses of, and access to, population-wide health data holdings. A social licence to operate is an informal agreement that is granted by communities and relevant stakeholders to an organization to do certain work. 11 Organizations holding a social licence may not even recognize that they have one until it is withdrawn. 11 In their analysis of negative public reaction to care.data in the UK, Carter and colleagues note that "the concept of a social licence describes how the expectations of society regarding some activities may go beyond compliance with the requirements of formal regulation; those who do not fulfil the conditions for the social licence (even if formally compliant) may experience ongoing challenge and contestation." 9 This
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