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"Giving something back": A systematic review and ethical enquiry into public views on the use of patient data for research in the United Kingdom and the Republic of Ireland.

ABSTRACT: Background: Use of patients' medical data for secondary purposes such as health research, audit, and service planning is well established in the UK. However, the governance environment, as well as public understanding about this work, have lagged behind. We aimed to systematically review the literature on UK and Irish public views of patient data used in research, critically analysing such views though an established biomedical ethics framework, to draw out potential strategies for future good practice guidance and inform ethical and privacy debates. Methods: We searched three databases using terms such as patient, public, opinion, and electronic health records. Empirical studies were eligible for inclusion if they surveyed healthcare users, patients or the public in UK and Ireland and examined attitudes, opinions or beliefs about the use of patient data for medical research. Results were synthesised into broad themes using a framework analysis. Results: Out of 13,492 papers and reports screened, 20 papers or reports were eligible. While there was a widespread willingness to share patient data for research for the common good, this very rarely led to unqualified support. The public expressed two generalised concerns about the potential risks to their privacy. The first of these concerns related to a party's competence in keeping data secure, while the second was associated with the motivation a party might have to use the data. Conclusions: The public evaluates trustworthiness of research organisations by assessing their competence in data-handling and motivation for accessing the data. Public attitudes around data-sharing exemplified several principles which are also widely accepted in biomedical ethics. This provides a framework for understanding public attitudes, which should be considered in the development in any guidance for regulators and data custodians. We propose four salient questions which decision makers should address when evaluating proposals for the secondary use of data.

SUBMITTER: Stockdale J

PROVIDER: S-EPMC6402072 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundThis study aimed to capture public beliefs about living with obesity, examine how these beliefs have changed over time and to explore whether certain characteristics were associated with them in a nationally representative sample of adults from the Republic of Ireland (RoI) and Northern Ireland (NI).MethodsA cross-sectional survey employed a random quota sampling approach to recruit a nationally representative sample of 1046 adults across NI and RoI. Telephone interviews captured information on demographics; health behaviours & attitudes; and beliefs about the consequences of obesity (measured using the Obesity Beliefs Scale). Univariable analyses compared beliefs about the consequences of living with obesity between participants with a self-reported healthy weight and those living with overweight or obesity, and non-responders (those for whom weight status could not be ascertained due to missing data). Multiple linear regression examined associations between obesity-related beliefs and socio-demographics, self-rated health and perceived ability to change health behaviours. Multiple linear regression also compared changes in obesity-related beliefs between 2013 and 2020 in the RoI.ResultsHigher endorsement of the negative outcomes of obesity was significantly associated with living with a healthy weight, higher self-rated health, dietary quality and perceived ability to improve diet and physical activity. Those who lived with overweight, with obesity and non-responders were less likely to endorse the negative consequences of obesity. Those living with obesity and non-responders were also more likely to support there is an increased cost and effort in maintaining a healthy weight. Comparison with survey data from 2013 showed that currently, there is a greater endorsement of the health benefits of maintaining a healthy weight (p < 0001), but also of the increased costs associated with it (p < 0001).ConclusionBeliefs about the consequences of maintaining a healthy body weight are associated with individuals' weight, self-rated health, diet and perceived ease of adoption of dietary and exercise-related improvements. Beliefs about the health risks of obesity and perceived greater costs associated with maintaining a healthy weight appear to have strengthened over time. Present findings are pertinent to researchers and policy makers involved in the design and framing of interventions to address obesity.

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"Giving something back": A systematic review and ethical enquiry into public views on the use of patient data for research in the United Kingdom and the Republic of Ireland.

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