Background

Optimising the use of patient data has the potential to produce a transformational change in healthcare planning, treatment, condition prevention and understanding disease progression. Establishing how people’s trust could be secured and a social licence to share data could be achieved is of paramount importance.

Methods

The study took place across Yorkshire and the Humber, in the North of the England, using a sequential mixed methods approach comprising focus groups, surveys and co-design groups. Twelve focus groups explored people’s response to how their health and social care data is, could, and should be used. A survey examined who should be able to see health and care records, acceptable uses of anonymous health and care records, and trust in different organisations. Case study cards addressed willingness for data to be used for different purposes. Co-creation workshops produced a set of guidelines for how data should be used.

Results

Focus group participants (n = 80) supported sharing health and care data for direct care and were surprised that this is not already happening. They discussed concerns about the currency and accuracy of their records and possible stigma associated with certain diagnoses, such as mental health conditions. They were less supportive of social care access to their records. They discussed three main concerns about their data being used for research or service planning: being identified; security limitations; and the potential rationing of care on the basis of information in their record such as their lifestyle choices. Survey respondents (n = 1031) agreed that their GP (98 %) and hospital doctors and nurses (93 %) should be able to see their health and care records. There was more limited support for pharmacists (37 %), care staff (36 %), social workers (24 %) and researchers (24 %). Respondents thought their health and social care records should be used to help plan services (88 %), to help people stay healthy (67 %), to help find cures for diseases (67 %), for research for the public good (58 %), but only 16 % for commercial research. Co-creation groups developed a set of principles for a social licence for data sharing based around good governance, effective processes, the type of organisation, and the ability to opt in and out.

Conclusion

People support their data being shared for a range of purposes and co-designed a set of principles that would secure their trust and consent to data sharing.

中文翻译：

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共同创建共享健康和护理数据的社会许可证

背景

优化患者数据的使用有可能在医疗保健计划，治疗，病情预防和了解疾病进展方面产生变革性的变化。建立如何确保人们的信任以及如何获得共享数据的社会许可至关重要。

方法

该研究在英格兰北部的约克郡和亨伯进行，采用了包括重点小组，调查和共同设计小组在内的顺序混合方法。十二个焦点小组探讨了人们对如何，可以和应该使用其健康和社会护理数据的反应。一项调查检查了谁应该能够查看健康和护理记录，可接受的匿名健康和护理记录用途以及对不同组织的信任。案例研究卡解决了将数据用于不同目的的意愿。共同创建的研讨会针对如何使用数据制定了一套指南。

结果

焦点小组参与者（n = 80）支持共享用于直接护理的健康和护理数据，并对此感到惊讶。他们讨论了有关记录的准确性和准确性以及与某些诊断（例如心理健康状况）相关的污名的担忧。他们不太支持社会护理访问他们的记录。他们讨论了有关将其数据用于研究或服务计划的三个主要问题：被识别；安全限制；以及根据他们记录中的信息（例如他们的生活方式选择）可能分配的护理。受访者（n = 1031）同意他们的全科医生（98％）和医院的医生和护士（93％）应该能够查看其健康和护理记录。对药师（37％），护理人员（36％），社会工作者（24％）和研究人员（24％）。受访者认为应使用其健康和社会护理记录来帮助计划服务（88％），帮助人们保持健康（67％），帮助找到治愈疾病的方法（67％），用于公共利益的研究（58％） ），但只有16％用于商业研究。联合创建小组基于良好的治理，有效的流程，组织的类型以及选择加入和退出的能力，为数据共享的社会许可制定了一套原则。

结论

人们支持出于各种目的共享数据，并共同设计了一套原则，以确保他们对数据共享的信任和同意。