Perceptions of anonymised data use and awareness of the NHS data opt-out amongst patients, carers and healthcare staff.
Perceptions of anonymised data use and awareness of the NHS data opt-out amongst patients, carers and healthcare staff.
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DOI：
10.1186/s40900-021-00281-2
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发表时间：
2021-06-14
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通讯作者：
PIONEER Data Hub
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作者：
Atkin C;Crosby B;Dunn K;Price G;Marston E;Crawford C;O'Hara M;Morgan C;Levermore M;Gallier S;Modhwadia S;Attwood J;Perks S;Denniston AK;Gkoutos G;Dormer R;Rosser A;Ignatowicz A;Fanning H;Sapey E;PIONEER Data Hub
英格兰实行国家数据选择退出（NDOO），用于研究和规划的机密卫生数据的二次使用。我们假设，公众对健康数据和NDOO二次使用的认识和支持会因参与者的人口统计学和医疗保健经验而异。我们探讨了患者/公众对二级数据使用的认识和看法，将潜在的研究人员分为国家卫生服务（NHS），学术界或商业界。我们评估了患者、护理人员、医护人员和公众对NDOO系统的认识。我们共同制定了在共享未经同意的健康数据进行研究时应考虑的建议。患者和公众参与计划，共同创建，包括患者和公众研讨会，问卷调查和关于匿名健康数据使用的讨论组。共有350人参加。健康数据使用的主要问题包括未经授权的数据重复使用，歧视的可能性和没有患者利益的数据共享。94%的受访者对他们的数据用于NHS研究感到高兴，85%用于学术研究，68%用于医疗公司，但非医疗公司的比例不到50%，并且意见因人口统计和参与者群体而异。调查结果显示，对NDOO的了解程度很低，所有受访者中有32%，所有NHS工作人员中有53%，所有患者中有29%知道NDOO。指导未经同意的二级健康数据使用的建议包括：健康数据的使用应使患者受益;数据共享决策应涉及患者/公众。这些数据应与卫生服务密切相关，并适用数据最小化原则。此外，二级卫生数据的使用应具有透明度，包括公开的项目、摘要和惠益清单。最后，参与数据访问决策的组织应参与增加NDOO知识的计划，以确保公众成员对自己的数据做出明智的选择。本研究中的大多数参与者报告说，当NHS访问时，将医疗保健数据用于次要目的是可以接受的。以学术和健康为重点的公司。然而，人们的认识有限，包括对国家发展目标办事处的认识。进一步制定公众同意的二级卫生数据使用建议，可以提高对二级卫生数据使用的认识和信心。在线版本包含补充材料，可通过10.1186/s40900-021-00281-2获得。来自常规护理的健康数据可以匿名化（保留与患者的联系，但删除识别特征）或匿名化（删除识别特征，切断与患者的联系），并用于研究和健康规划;称为“二次使用”。英国国家卫生服务（NHS）是英国唯一的公共卫生服务。NHS支持使用国家数据选择退出系统的二级数据。数据二次利用的潜在好处是显而易见的，但也有人提出了关切。虽然数据选择退出是公开的，但目前还不清楚公众对这一计划的认识程度。我们报告了一个病人和公开创建和交付的一系列活动，包括> 350人;与年轻人，病人，NHS工作人员和公众;以评估数据共享的关注，知识和接受程度。对使用二级卫生数据的看法和支持程度因被询问者（按年龄、性别）及其卫生服务经验（工作人员、患者、公众）而异。即使在NHS工作人员中，对限制二级数据使用的计划（如英国国家数据Op-Out）的了解也很低。共享健康数据的主要关切包括今后的数据使用、歧视和剥削的可能性以及从数据使用中获得商业利益而对患者没有好处。尽管如此，大多数参与者同意与NHS，学术和商业健康实体共享健康数据。为提高卫生数据二次使用的可接受性，商定的共同创建的主题包括关于“选择退出”计划的教育、卫生服务对数据使用的监督（作为最值得信赖的合作伙伴）、公众和患者参与数据共享决策以及公共透明度。在线版本包含补充材料，可通过10.1186/s40900-021-00281-2获得。
England operates a National Data Opt-Out (NDOO) for the secondary use of confidential health data for research and planning. We hypothesised that public awareness and support for the secondary use of health data and the NDOO would vary by participant demography and healthcare experience. We explored patient/public awareness and perceptions of secondary data use, grouping potential researchers into National Health Service (NHS), academia or commercial. We assessed awareness of the NDOO system amongst patients, carers, healthcare staff and the public. We co-developed recommendations to consider when sharing unconsented health data for research. A patient and public engagement program, co-created and including patient and public workshops, questionnaires and discussion groups regarding anonymised health data use. There were 350 participants in total. Central concerns for health data use included unauthorised data re-use, the potential for discrimination and data sharing without patient benefit. 94% of respondents were happy for their data to be used for NHS research, 85% for academic research and 68% by health companies, but less than 50% for non-healthcare companies and opinions varied with demography and participant group. Questionnaires showed that knowledge of the NDOO was low, with 32% of all respondents, 53% of all NHS staff and 29% of all patients aware of the NDOO. Recommendations to guide unconsented secondary health data use included that health data use should benefit patients; data sharing decisions should involve patients/public. That data should remain in close proximity to health services with the principles of data minimisation applied. Further, that there should be transparency in secondary health data use, including publicly available lists of projects, summaries and benefits. Finally, organisations involved in data access decisions should participate in programmes to increase knowledge of the NDOO, to ensure public members were making informed choices about their own data. The majority of participants in this study reported that the use of healthcare data for secondary purposes was acceptable when accessed by NHS. Academic and health-focused companies. However, awareness was limited, including of the NDOO. Further development of publicly-agreed recommendations for secondary health data use may improve both awareness and confidence in secondary health data use. The online version contains supplementary material available at 10.1186/s40900-021-00281-2. Health data from routine care can be pseudonymised (with a link remaining to the patient but identifying features removed) or anonymised (with identifying features removed and the link to the patient severed) and used for research and health planning; termed “secondary use”. The National Health Service (NHS) is a single publicly-funded health service for the United Kingdom (UK). The NHS supports secondary data use with a National Data opt-out system. The potential benefits of data secondary use are clear but concerns have been raised. Although the Data Opt-Out is publicised, it is unclear how much public awareness there is of this scheme. We report a patient and publicly created and delivered series of activities including > 350 people; with young adults, patients, NHS staff and the public; to assess concerns, knowledge and acceptance of data sharing. Perceptions of and support for secondary health data use varied depending on who was asked (by age, gender) and their experience of health services (Staff member, patient, member of the public). Knowledge of schemes to limit secondary data use (such as the UK National Data Op-Out) was low, even among NHS staff. The main concerns of sharing health data included onward data use, the potential for discrimination and exploitation and commercial gain from data use with no benefit to patients. Despite this, most participants agreed with health data sharing with NHS, academic and commercial health-based entities. Agreed, co-created themes to increase the acceptability of health data secondary use included education about ‘Opt-out’ schemes, health service oversight of data use (as the most trusted partner), public and patient involvement in data sharing decisions and public transparency. The online version contains supplementary material available at 10.1186/s40900-021-00281-2.