Reynolds Joanna, Ogden Margaret, Beresford Ruth
Department of Psychology, Sociology & Politics, Sheffield Hallam University, Heart of the Campus, Collegiate Crescent, Sheffield, S10 2BP, UK.
Public Contributor, County Durham, UK.
Res Involv Engagem. 2021 Jul 22;7:53. doi: 10.1186/s40900-021-00296-9. eCollection 2021.
Increasing the accessibility of public and patient involvement (PPI) in health research for people from diverse backgrounds is important for ensuring all voices are heard and represented. Critiques of PPI being dominated by 'the usual suspects' reflect concerns over the barriers to involvement in PPI faced by people from minority groups or non-professional backgrounds. Yet, what has received less attention is how undertaking PPI work might produce diverse experiences, potentially shaping the motivation and capacity of people from different backgrounds to continue in PPI.
We conducted qualitative research to explore experiences of the health research PPI field in the UK and to understand how these might shape the accessibility of PPI for people of diverse backgrounds. We conducted in-depth and follow-up interviews with five PPI contributors with experience of multiple health research projects, and a focus group with nine people in professional roles relating to PPI. Interview data were analysed using a narrative approach, and then combined with the focus group data for thematic analysis.
The structure, organisation and relationships of health research in the UK all shape PPI experiences in ways that can intersect the different backgrounds and identities of contributors, and can pose barriers to involvement and motivation for some. Navigating processes for claiming expenses can be frustrating particularly for people from lower-income backgrounds or with additional needs, and short-term research can undermine relationships of trust between contributors and professionals. Pressure on PPI coordinators to find 'more diverse' contributors can also undermine ongoing relationships with contributors, and how their inputs are valued.
To increase diversity within PPI, and to ensure that people of different backgrounds are supported and motivated to continue in PPI, changes are needed in the wider health research infrastructure in the UK. More resources are required to support relationships of trust over time between contributors and professionals, and to ensure the unique circumstances of each contributor are accommodated within and across PPI roles. Finally, critical reflection on the pressure in PPI to seek 'more diverse' contributors is needed, to understand the impacts of this on those already involved.
提高健康研究中公众和患者参与（PPI）对不同背景人群的可及性，对于确保所有声音都能被听到和代表至关重要。对PPI被“常客”主导的批评反映了对少数群体或非专业背景人群参与PPI所面临障碍的担忧。然而，较少受到关注的是开展PPI工作如何可能产生多样化的经历，这可能会影响不同背景的人继续参与PPI的动机和能力。
我们进行了定性研究，以探索英国健康研究PPI领域的经历，并了解这些经历如何影响不同背景人群参与PPI的可及性。我们对五位参与过多个健康研究项目的PPI贡献者进行了深入和跟进访谈，并与九位从事与PPI相关专业工作的人员进行了焦点小组讨论。访谈数据采用叙事方法进行分析，然后与焦点小组数据结合进行主题分析。
英国健康研究的结构、组织和关系都以可能与贡献者的不同背景和身份相互交织的方式塑造了PPI经历，并可能对一些人的参与和动机构成障碍。报销费用的流程对来自低收入背景或有其他需求的人来说可能特别令人沮丧，短期研究可能会破坏贡献者与专业人员之间的信任关系。PPI协调员寻找“更多样化”贡献者的压力也可能破坏与贡献者的持续关系，以及他们的意见如何得到重视。
为了增加PPI内部的多样性，并确保不同背景的人得到支持并有动力继续参与PPI，英国更广泛的健康研究基础设施需要做出改变。需要更多资源来支持贡献者与专业人员之间长期的信任关系，并确保每个贡献者的独特情况在PPI角色内部和之间都能得到考虑。最后，需要对PPI中寻求“更多样化”贡献者的压力进行批判性反思，以了解这对已经参与其中的人的影响。
