Killett Anne, Micklewright Kerry, Carroll Rachael, Akdur Gizdem, Allinson Emily, Crellin Liz, de Corte Kaat, Fox Margaret, Hanratty Barbara, Irvine Lisa, Jones Liz, Kelly Marlene, Lloyd Therese, Meyer Julienne, Spilsbury Karen, Towers Ann-Marie, Tracey Freya, Willmott John, Goodman Claire
School of Health Sciences, University of East Anglia, Norwich, UK.
Centre for Research in Public Health and Community Care (CRIPACC), University of Hertfordshire, Hatfield, UK.
Health Expect. 2025 Feb;28(1):e70140. doi: 10.1111/hex.70140.
Information on care home residents in England is captured in numerous data sets (care home records, General Practitioner records, community nursing, etc.) but little of this information is currently analysed in a way that is useful for care providers, current or future residents and families or that realises the potential of data to enhance care provision. The DACHA study aimed to develop and test a minimum data set (MDS) which would bring together data that is useful to support and improve care and facilitate research. It is that utility that underscores the importance of meaningful public involvement (PI) with the range of groups of people affected. This paper analyses the involvement of family members of care home residents and care home staff through a PI Panel.
The objective for the PI activities was to consistently bring the knowledge and perspectives of family members and care home staff to influence the ongoing design and conduct of the DACHA study.
The bespoke methods of PI included a dedicated PI team and a PI Panel of public contributors. Meetings were recorded and minutes agreed, resulting actions were tracked and reflections on the PI recorded. A democratic, social relations approach was used to frame the analysis.
A PI panel met 17 times. All meetings included both family members and care home staff. Analysis of the records and reflections developed the following themes about the operation of the PI: deepened understanding of the data environment in care homes; Influence on the pilot MDS; aiming for best research practices with care homes; personal/professional development for PI members; expectations of the project. Learning points for future research projects are developed.
PI shaped the design and conduct of the DACHA study, grounding it in the needs and perspectives of people using and providing social care. Data research has a huge responsibility to accurately incorporate relevant public perspectives. There is an implicit assumption that records and data are objective and 'speak for themselves' however there can be unintended consequences from introduction of new data requirements in practice.
Public contributors to this manuscript include family members of older people living in care homes and staff of care homes. The wider study also involved as the public, older people living in care homes. Public contributors helped develop the project, contributed throughout the conduct of the study and some chose to be involved in preparing this manuscript.
关于英格兰养老院居民的信息记录在众多数据集中（养老院记录、全科医生记录、社区护理记录等），但目前这些信息很少以对护理提供者、当前或未来居民及家庭有用的方式进行分析，也未充分发挥数据在改善护理方面的潜力。DACHA研究旨在开发并测试一套最小数据集（MDS），该数据集将汇集有助于支持和改善护理以及促进研究的数据。正是这种实用性凸显了与受影响的各类人群进行有意义的公众参与（PI）的重要性。本文通过一个公众参与小组分析了养老院居民家庭成员和养老院工作人员的参与情况。
公众参与活动的目标是持续引入家庭成员和养老院工作人员的知识与观点，以影响DACHA研究的持续设计和实施。
定制的公众参与方法包括一个专门的公众参与团队和一个由公众贡献者组成的公众参与小组。会议进行记录并确定会议纪要，跟踪所产生的行动，并记录对公众参与的反思。采用民主的社会关系方法进行分析。
一个公众参与小组召开了17次会议。所有会议都有家庭成员和养老院工作人员参加。对记录和反思的分析得出了以下关于公众参与运作的主题：对养老院数据环境的深入理解；对试点最小数据集的影响；力求在养老院实现最佳研究实践；公众参与小组成员的个人/职业发展；对项目的期望。还总结了未来研究项目的经验教训。
公众参与塑造了DACHA研究的设计和实施，使其基于使用和提供社会护理的人员的需求和观点。数据研究有重大责任准确纳入相关公众观点。有一种隐含的假设，即记录和数据是客观的且“不言自明”，然而在实践中引入新的数据要求可能会产生意想不到的后果。
本文的公众贡献者包括养老院中老年人的家庭成员和养老院工作人员。更广泛的研究还将养老院中的老年人作为公众纳入其中。公众贡献者帮助开展了该项目，在研究过程中全程参与，一些人还选择参与撰写本文。
