Understanding how to build a social licence for using novel linked datasets for planning and research in Kent, Surrey and Sussex: results of deliberative focus groups.
Understanding how to build a social licence for using novel linked datasets for planning and research in Kent, Surrey and Sussex: results of deliberative focus groups.
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DOI：
10.23889/ijpds.v5i3.2114
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发表时间：
2020
期刊：
影响因子：
--
通讯作者：
Cassell, Jackie
中科院分区：
文献类型：
--
作者：
Ford, Elizabeth;Rees-Roberts, Melanie;Stanley, Kathryn;Goddard, Katie;Giles, Sarah;Armes, Jo;Ikhile, Deborah;Madzvamuse, Anotida;Spencer-Hughes, Victoria;George, Abraham;Farmer, Chris;Cassell, Jackie
英国新成立的NHS综合护理委员会（ICBs）的数字计划意味着匿名患者数据的管理和链接首次在许多领域进行。在英格兰东南部的肯特、萨里和苏塞克斯（KSS），公共卫生团队希望使用这些数据集来回答战略性的人口健康问题，但公众对使用患者数据的期望尚不清楚。我们的目标是与KSS的公民接触，通过审议讨论收集他们对数据链接和再利用的看法和期望。我们与KSS的79名公民举行了五个3小时的审议焦点小组，介绍了有关数据的潜在用途，保障措施和公众参与数据集治理和决策的机制的信息。每次发言后，与会者在小组讨论会上讨论了他们的意见，并按主题进行了记录、转录和分析。重点小组提出了15个主题，代表了与会者对保护关联数据的益处、风险和价值的看法。与会者在很大程度上支持使用患者数据来提高卫生服务效率和资源管理、预防性服务和院外护理、联合服务和信息流。大多数与会者对数据准确性、违规和黑客行为表示担忧，并担心数据的商业用途。他们建议，通过审计跟踪和关于问责制的明确信息来实现数据使用的透明度，确保数据的重复使用不会使耻辱和歧视永久化，公众持续、包容和有价值地参与数据集决策，以及致力于建立信任，将满足他们对负责任的数据使用的期望。与会者基本上赞成使用与患者相关的数据集，但希望承诺透明度和公众参与。研究结果与之前的社会许可原则相对应，可用于告知ICB数字项目团队如何以值得信赖和社会可接受的方式继续使用链接数据集。
Digital programmes in the newly created NHS integrated care boards (ICBs) in the United Kingdom mean that curation and linkage of anonymised patient data is underway in many areas for the first time. In Kent, Surrey and Sussex (KSS), in Southeast England, public health teams want to use these datasets to answer strategic population health questions, but public expectations around use of patient data are unknown. We aimed to engage with citizens of KSS to gather their views and expectations of data linkage and re-use, through deliberative discussions. We held five 3-hour deliberative focus groups with 79 citizens of KSS, presenting information about potential uses of data, safeguards, and mechanisms for public involvement in governance and decision making about datasets. After each presentation, participants discussed their views in facilitated small groups which were recorded, transcribed and analysed thematically. The focus groups generated 15 themes representing participants’ views on the benefits, risks and values for safeguarding linked data. Participants largely supported use of patient data to improve health service efficiency and resource management, preventative services and out of hospital care, joined-up services and information flows. Most participants expressed concerns about data accuracy, breaches and hacking, and worried about commercial use of data. They suggested that transparency of data usage through audit trails and clear information about accountability, ensuring data re-use does not perpetuate stigma and discrimination, ongoing, inclusive and valued involvement of the public in dataset decision-making, and a commitment to building trust, would meet their expectations for responsible data use. Participants were largely favourable about the proposed uses of patient linked datasets but expected a commitment to transparency and public involvement. Findings were mapped to previous tenets of social license and can be used to inform ICB digital programme teams on how to proceed with use of linked datasets in a trustworthy and socially acceptable way.
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影响因子：
2.7
作者：
Aitken M;de St Jorre J;Pagliari C;Jepson R;Cunningham-Burley S
通讯作者：
Cunningham-Burley S
影响因子：
4.1
作者：
Kalkman S;van Delden J;Banerjee A;Tyl B;Mostert M;van Thiel G
通讯作者：
van Thiel G
研究的社会许可证：为什么Care.Data遇到了麻烦。
影响因子：
4.1
作者：
Carter P;Laurie GT;Dixon-Woods M
通讯作者：
Dixon-Woods M
DOI：
10.1017/dap.2021.34
发表时间：
2021-01-01
期刊：
DATA & POLICY
影响因子：
--
作者：
Edwards, Rosalind;Gillies, Val;Gorin, Sarah
通讯作者：
Gorin, Sarah
影响因子：
--
作者：
Aitken M;Tully MP;Porteous C;Denegri S;Cunningham-Burley S;Banner N;Black C;Burgess M;Cross L;van Delden JJ;Ford E;Fox S;Fitzpatrick NK;Gallacher K;Goddard C;Hassan L;Jamieson R;Jones KH;Kaarakainen M;Lugg-Widger F;McGrail K;McKenzie A;Moran R;Murtagh MJ;Oswald M;Paprica A;Perrin N;Richards EV;Rouse J;Webb J;Willison DJ
通讯作者：
Willison DJ