School of Health Sciences, Faculty of Environmental and Life Sciences, University of Southampton, Southampton, UK; NIHR Southampton Biomedical Research Centre, University Hospital Southampton NHS Foundation Trust and University of Southampton, Southampton, UK.
NIHR Southampton Biomedical Research Centre, University Hospital Southampton NHS Foundation Trust and University of Southampton, Southampton, UK; NIHR Southampton Clinical Research Facility, University of Southampton and University Hospitals Southampton NHS Foundation Trust, UK.
Public Health. 2024 Aug;233:90-99. doi: 10.1016/j.puhe.2024.05.007. Epub 2024 Jun 11.
Patient and public involvement and engagement (PPIE) is essential for improved research outcomes and reduced research waste. To be effective, PPIE should provide opportunities for diverse groups to contribute to all research stages. However, UK ethnic minority communities remain underrepresented in research. This article describes strategies adopted in a public health research project that were effective in building trust and increasing inclusion of ethnic minority communities. The study team of researchers and PPIE partners reflects lessons learnt during the project and describe six main strategies that built meaningful levels of trust and inclusion: 1) early start to recruitment of PPIE partners; 2) relationship-focused engagement; 3) co-production and consultation activities; 4) open communication and iterative feedback; 5) co-production of project closure activities, and; 6) diverse research team. Meaningful outcomes for the community included the involvement of people from ethnic minorities as research participants and PPIE partners, community wellbeing, co-production of public health recommendations co-presented at the UK Houses of Parliament, and consortium-wide impact evidenced by the enrolment of 51 active PPIE partners. PPIE partners reflect on their research involvement, offering advice to researchers and encouraging people from ethnic minority communities to take part in research. An important message from PPIE partners is that involvement should not be restricted to projects specific to ethnic minorities but become a routine part of general population research, recognising ethnic minorities as an integral part of UK society. In conclusion, this article demonstrates that with appropriate strategies, inclusion and diversity can be achieved in public health research. We recommend researchers, practitioners and policy makers adopt these strategies when planning their public health projects.
患者和公众参与和投入(PPIE)对于改善研究结果和减少研究浪费至关重要。为了有效,PPIE 应该为不同群体提供机会,让他们参与所有研究阶段。然而,英国少数民族社区在研究中仍然代表性不足。本文描述了在一项公共卫生研究项目中采用的策略,这些策略在建立信任和增加少数民族社区的包容性方面非常有效。研究团队的研究人员和 PPIE 合作伙伴反映了项目过程中学到的经验教训,并描述了建立有意义的信任和包容的六个主要策略:1)尽早开始招募 PPIE 合作伙伴;2)以关系为重点的参与;3)共同制作和咨询活动;4)开放沟通和迭代反馈;5)共同制作项目结束活动;6)多样化的研究团队。社区的有意义的成果包括少数民族人士作为研究参与者和 PPIE 合作伙伴的参与、社区福利、共同制作公共卫生建议并在英国议会联合呈现、以及通过招募 51 名积极的 PPIE 合作伙伴证明的联盟范围内的影响。PPIE 合作伙伴反思他们的研究参与,为研究人员提供建议,并鼓励少数民族社区的人参与研究。PPIE 合作伙伴传达的一个重要信息是,参与不应该仅限于针对少数民族的项目,而应该成为一般人群研究的常规部分,将少数民族视为英国社会不可或缺的一部分。总之,本文表明,通过适当的策略,可以在公共卫生研究中实现包容性和多样性。我们建议研究人员、从业者和政策制定者在规划公共卫生项目时采用这些策略。