Involving service users in the Birth Timing project, a data linkage study analysing the timing of births and their outcomes.
Involving service users in the Birth Timing project, a data linkage study analysing the timing of births and their outcomes.
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DOI：
10.23889/ijpds.v5i3.1366
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发表时间：
2020-11-02
影响因子：
--
通讯作者：
Jill Macfarlane A
中科院分区：
文献类型：
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作者：
Newburn M;Scanlon M;Plachcinski R;Jill Macfarlane A
我们报告了一项基于人口的数据关联研究中服务用户的参与情况，该研究旨在分析英格兰和威尔士的每日、每周和每年的出生周期，妇女和婴儿的结果，以及它们对NHS的影响。公众参与和参与(PI&E)在产科服务领域有着悠久的历史，尽管公众参与和参与(PI&E)在产科数据关联研究中在英国是新的。我们使用了GRIPP2简表，这是一个为报告公众参与研究而设计的工具。我们的目标是让广泛的产科服务用户及其代表参与进来，以确保我们使用患者可识别的常规收集的分娩和出生记录是可以接受的，并确保我们使用关联数据的研究分析与他们所表达的安全和护理质量需求相关。PI&E采用三层方法。研究咨询小组拥有PI&E联合调查员和PI&E成员，确保服务用户的参与是项目战略发展的一部分。通过四个区域讲习班，吸引了更多来自英格兰和威尔士的产妇服务用户。从设计阶段到传播阶段，两名具有孕产研究PI&E经验的联合调查员作为服务用户研究员参与其中。四位PI&E研究顾问贡献了服务用户的观点。参与研讨会吸引了大约100名与会者，主要从英格兰和威尔士的产妇服务联络委员会和一个社区参与小组招募。他们支持使用患者可识别的数据，认为这项研究有潜力提高产科服务的安全性和质量。他们提供了他们的经验和关切，这将有助于解释这些分析。PI&E“知识中介”的使用成功地弥合了数据密集型研究和现场体验之间的差距，但在参与和参与方面需要更多的包容性。尊重服务使用者的关切和问题为研究人员进行分析提供了社会合法性和相关性框架。
We report on service user participation in a population-based data linkage study designed to analyse the daily, weekly and yearly cycles of births in England and Wales, the outcomes for women and babies, and their implications for the NHS. Public Involvement and Engagement (PI&E) has a long history in maternity services, though PI&E in maternity data linkage studies is new in the United Kingdom. We have used the GRIPP2 short form, a tool designed for reporting public involvement in research. We aimed to involve and engage a wide range of maternity service users and their representatives to ensure that our use of patient-identifiable routinely collected maternity and birth records was acceptable and that our research analyses using linked data were relevant to their expressed safety and quality of care needs. A three-tiered approach to PI&E was used. Having both PI&E co-investigators and PI&E members of the Study Advisory Group ensured service user involvement was part of the strategic development of the project. A larger constituency of maternity service users from England and Wales was engaged through four regional workshops. Two co-investigators with experience of PI&E in maternity research were involved as service user researchers from design stage to dissemination. Four PI&E study advisors contributed service user perspectives. Engagement workshops attracted around 100 attendees, recruited largely from Maternity Services Liaison Committees in England and Wales, and a community engagement group. They supported the use of patient-identifiable data, believing the study had potential to improve safety and quality of maternity services. They contributed their experiences and concerns which will assist with interpretation of the analyses. Use of PI&E ‘knowledge intermediaries’ successfully bridged the gap between data intensive research and lived experience, but more inclusivity in involvement and engagement is required. Respecting the concerns and questions of service users provides social legitimacy and a relevance framework for researchers carrying out analyses.
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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：
4.2
作者：
Duc Anh Ngo;Rege, Saumitra V.;Holstege, Christopher P.
通讯作者：
Holstege, Christopher P.
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
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
影响因子：
1.6
作者：
Akrich, Madeleine;Leane, Maire;Arriscado Nunes, Joao
通讯作者：
Arriscado Nunes, Joao