Public Trust, Deliberative Engagement and Health Data Projects: Beyond Legal Provisions

IF 16.4 1区化学 Q1 CHEMISTRY, MULTIDISCIPLINARY

Accounts of Chemical Research Pub Date : 2021-10-05 DOI:10.17351/ests2021.1197

Nishtha Bharti, C. O’Donovan, M. Smallman, James Wilson

引用次数: 3

Abstract

In England, a new scheme for collating and sharing General Practitioners’ data has faced resistance from various quarters and has been deferred twice. While insufficient communication and ambiguous safeguards explain the widespread dissatisfaction expressed by the public and experts, we argue how dwindling public trust can be the most damaging variable in this picture - with implications not only for this scheme, but for any future project that aims to mobilise health data for medical research and innovation. We also highlight the indispensability of deliberative public engagement on the values being prioritised in health data initiatives, the significance of securing social license in addition to legal assurances, and the lessons in it of global pertinence.

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公众信任、深思熟虑的参与和健康数据项目：超越法律规定

在英格兰，一项整理和共享全科医生数据的新计划遭到了各方的抵制，并被推迟了两次。虽然沟通不足和保障措施不明确解释了公众和专家表达的广泛不满，但我们认为，公众信任的减少可能是这幅图中最具破坏性的变量——这不仅对该计划有影响，而且对未来任何旨在调动健康数据进行医学研究和创新的项目都有影响。我们还强调了公众对健康数据倡议中优先考虑的价值观的审慎参与的必要性，除了法律保证之外，确保社会许可的重要性，以及其中具有全球针对性的经验教训。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Accounts of Chemical Research 化学-化学综合

CiteScore

31.40

自引率

1.10%

发文量

312

审稿时长

2 months

期刊介绍： Accounts of Chemical Research presents short, concise and critical articles offering easy-to-read overviews of basic research and applications in all areas of chemistry and biochemistry. These short reviews focus on research from the author’s own laboratory and are designed to teach the reader about a research project. In addition, Accounts of Chemical Research publishes commentaries that give an informed opinion on a current research problem. Special Issues online are devoted to a single topic of unusual activity and significance. Accounts of Chemical Research replaces the traditional article abstract with an article "Conspectus." These entries synopsize the research affording the reader a closer look at the content and significance of an article. Through this provision of a more detailed description of the article contents, the Conspectus enhances the article's discoverability by search engines and the exposure for the research.