Patient and Public Involvement in Research Evaluating Integrated Care for People Experiencing Homelessness: Findings From the PHOENIx Community Pharmacy Pilot Randomised-Controlled Trial

IF 3 3区医学 Q2 HEALTH CARE SCIENCES & SERVICES

Health Expectations Pub Date : 2024-10-18 DOI:10.1111/hex.70070

Andrew McPherson, Vibhu Paudyal, Richard Lowrie, Helena Heath, Jane Moir, Natalie Allen, Nigel Barnes, Hugh Hill, Adnan Araf, Cian Lombard, Steven Ross, Sarah Tearne, Parbir Jagpal, Versha Cheed, Shabana Akhtar, George Provan, Andrea Williamson, Frances S. Mair

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Abstract

Introduction

There is a paucity of research on and a limited understanding of patient and public involvement (PPI) in the context of research in homelessness and, in particular, direct involvement of people with lived and living experience of homelessness (PEH) as expert advisors. We aim to report on outcomes and reflections from lived experience advisory panel (LEAP) meetings and PPI activities, held throughout the study lifecycle of a pilot randomised-controlled trial (RCT) focused on evaluating integrated health and practical support for PEH.

Methods

Community Pharmacy Homeless Outreach Engagement Non-medical Independent prescribing Rx (PHOENIx Community Pharmacy RCT) is an integrated health and social care intervention for people experiencing homelessness who present to community pharmacy. Intervention includes weekly support from a pharmacist prescriber and a third sector support worker for up to 6 months. PPI activities undertaken throughout the study were documented, including outcomes of LEAP meetings. Outcome reporting followed Guidance for Reporting Involvement of Patients and the Public 2 Short Form (GRIPP2-SF).

Results

In total, 17 members were recruited into the LEAP; six meetings (three in two study sites) were held. PPI input was also received through representation from homelessness third sector organisation staff as study co-applicants and core membership in the trial steering committee. Together, the PPI activities helped shape the study proposal, design of study materials, data analysis and dissemination materials. LEAP panel members offered valuable input via their experience and expertise into the delivery and refinement of interventions. Although longitudinal input was received from some LEAP members, ensuring repeat attendance in the pre-planned meetings was challenging.

Conclusion

People who face social exclusion and marginalisation can provide highly valuable input as equal partners in co-design and delivery of interventions seeking to improve their health and well-being. Fluid membership and flexible methods of seeking and incorporating advice can offer pragmatic approaches to minimising barriers to continued involvement in research.

Patient or Public Contribution

This study reports findings and learning relevant to involvement of people with lived and living experience of homelessness as advisors in a research study. It is important for researchers to offer fluid memberships and use diverse methods to receive input from lived experience members, as traditional PPI methodology may be insufficient to ensure inclusivity. Staff and volunteers from third sector organisations were important PPI partners who bring their experience based on frontline service provision, often as the first port of call for people experiencing severe and multiple disadvantage.

Trial Registration

ISRCTN88146807.

查看原文本刊更多论文

患者和公众参与评估无家可归者综合护理的研究：PHOENIx 社区药房试点随机对照试验结果》。

导言：关于无家可归问题研究中的患者和公众参与 (PPI)，尤其是让有无家可归经历和生活经验的人作为专家顾问直接参与研究的研究很少，对其了解也很有限。我们旨在报告生活体验顾问小组（LEAP）会议和患者与公众参与（PPI）活动的成果和反思，这些会议和活动是在一项试点随机对照试验（RCT）的整个研究生命周期中举行的，重点是评估为无家可归者提供的综合健康和实际支持：社区药房无家可归者外展参与非医疗独立处方 Rx（PHOENIx 社区药房 RCT）是一项针对到社区药房就诊的无家可归者的综合健康和社会关怀干预措施。干预措施包括每周由药剂师开具处方，并由第三部门支持人员提供长达 6 个月的支持。在整个研究过程中开展的 PPI 活动均有记录，包括 LEAP 会议的成果。结果报告遵循《患者和公众参与报告指南 2 简表》（GRIPP2-SF）：LEAP共招募了17名成员；举行了六次会议（三次在两个研究地点举行）。此外，无家可归者第三部门组织的工作人员作为研究的共同申请者和试验指导委员会的核心成员，也为公众参与提供了意见。这些公众参与活动共同帮助制定了研究方案、设计了研究材料、进行了数据分析并编写了宣传材料。LEAP 小组成员通过他们的经验和专业知识为干预措施的实施和完善提供了宝贵的意见。尽管一些 LEAP 小组成员提供了纵向意见，但确保重复参加预先计划的会议仍具有挑战性：结论：面临社会排斥和边缘化的人可以作为平等的合作伙伴，在共同设计和实施旨在改善其健康和福祉的干预措施方面提供非常有价值的意见。灵活的成员资格以及寻求和采纳建议的灵活方法可以提供务实的方法，最大限度地减少继续参与研究的障碍：本研究报告了与无家可归者作为顾问参与研究相关的发现和学习。对于研究人员来说，重要的是要提供不固定的成员资格，并使用多种方法来听取有生活经验的成员的意见，因为传统的公众参与方法可能不足以确保包容性。来自第三部门组织的工作人员和志愿者是重要的PPI合作伙伴，他们带来了基于一线服务提供的经验，通常是遭遇严重和多重不利处境的人们的第一求助渠道：试验注册：ISRCTN88146807。

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来源期刊

Health Expectations 医学-公共卫生、环境卫生与职业卫生

CiteScore

5.20

自引率

9.40%

发文量

251

审稿时长

>12 weeks

期刊介绍： Health Expectations promotes critical thinking and informed debate about all aspects of patient and public involvement and engagement (PPIE) in health and social care, health policy and health services research including: • Person-centred care and quality improvement • Patients'' participation in decisions about disease prevention and management • Public perceptions of health services • Citizen involvement in health care policy making and priority-setting • Methods for monitoring and evaluating participation • Empowerment and consumerism • Patients'' role in safety and quality • Patient and public role in health services research • Co-production (researchers working with patients and the public) of research, health care and policy Health Expectations is a quarterly, peer-reviewed journal publishing original research, review articles and critical commentaries. It includes papers which clarify concepts, develop theories, and critically analyse and evaluate specific policies and practices. The Journal provides an inter-disciplinary and international forum in which researchers (including PPIE researchers) from a range of backgrounds and expertise can present their work to other researchers, policy-makers, health care professionals, managers, patients and consumer advocates.