Julia Keenan

Learning to work together – lessons from a reflective analysis of a research project on public involvement

Plain English summaryPatient and public involvement (PPI) in research is very important, and funders and the NHS all expect this to happen. What this means in practice, and how to make it really successful, is therefore an important research question. This article analyses the experience of a research team using PPI, and makes recommendations on strengthening PPI in research.There were different PPI roles in our study – some people were part of the research team: some were on the advisory group; and there were patient groups who gave specific feedback on how to make research work better for their needs. We used minutes, other written documents, and structured individual and group reflections to learn from our own experiences over time.The main findings were:- for researchers and those in a PPI role to work in partnership, project structures must allow flexibility and responsiveness to different people’s ideas and needs; a named link person can ensure support; PPI representatives need to feel fully included in the research; make clear what is expected for all roles; and ensure enough time and funding to allow meaningful involvement. Some roles brought more demands but also more rewards than others - highlighting that it is important that people giving up their time to help with research experience gains from doing so. Those contributing to PPI on a regular basis may want to learn new skills, rather than always doing the same things. Researchers and the public need to find ways to develop roles in PPI over time. We also found that, even for a team with expertise in PPI, there was a need both for understanding of different ways to contribute, and an evolving ‘normalisation’ of new ways of working together over time, which both enriched the process and the outputs.AbstractBackground Patient and public involvement (PPI) is now an expectation of research funders, in the UK, but there is relatively little published literature on what this means in practice – nor is there much evaluative research about implementation and outputs. Policy literature endorses the need to include PPI representation at all stages of planning, performing and research dissemination, and recommends resource allocation to these roles; but details of how to make such inputs effective in practice are less common. While literature on power and participation informs the debate, there are relatively few published case studies of how this can play out through the lived experience of PPI in research; early findings highlight key issues around access to knowledge, resources, and interpersonal respect. This article describes the findings of a case study of PPI within a study about PPI in research. Methods The aim of the study was to look at how the PPI representatives’ inputs had developed over time, key challenges and changes, and lessons learned. We used realist evaluation and normalisation process theory to frame and analyse the data, which was drawn from project documentation, minutes of meetings and workshops, field notes and observations made by PPI representatives and researchers; documented feedback after meetings and activities; and the structured feedback from two formal reflective meetings. Results Key findings included the need for named contacts who support, integrate and work with PPI contributors and researchers, to ensure partnership working is encouraged and supported to be as effective as possible. A structure for partnership working enabled this to be enacted systematically across all settings. Some individual tensions were nonetheless identified around different roles, with possible implications for clarifying expectations and deepening understandings of the different types of PPI contribution and of their importance. Even in a team with research expertise in PPI, the data showed that there were different phases and challenges to ‘normalising’ the PPI input to the project. Mutual commitment and flexibility, embedded through relationships across the team, led to inclusion and collaboration. Conclusion Work on developing relationships and teambuilding are as important for enabling partnership between PPI representatives and researchers as more practical components such as funding and information sharing. Early explicit exploration of the different roles and their contributions may assist effective participation and satisfaction.

How embedded is public involvement in mainstream health research in England a decade after policy implementation? A realist evaluation:

Objectives To explore how embedded patient and public involvement is within mainstream health research following two decades of policy-driven work to underpin health research with patient and public involvement in England. Methods Realist evaluation using Normalization Process Theory as a programme theory to understand what enabled patient and public involvement to be embedded as normal practice. Data were collected through a national scoping and survey, and qualitative methods to track patient and public involvement processes and impact over time within 22 nationally funded research projects. Results In research studies that were able to create reciprocal working relationships and to embed patient and public involvement this was contingent on: the purpose of patient and public involvement being clear; public contributors reflecting research end-beneficiaries; researchers understanding the value of patient and public involvement; patient and public involvement opportunities being provided throughout the research and ongoing evaluation of patient and public involvement. Key contested areas included: whether to measure patient and public involvement impact; seeking public contributors to maintain a balance between being research-aware and an outsider standpoint seen as ‘authentically’ lay; scaling-up patient and public involvement embedded within a research infrastructure rather than risk token presence and whether patient and public involvement can have a place within basic science. Conclusions While patient and public involvement can be well-integrated within all types of research, policy makers should take account of tensions that must be navigated in balancing moral and methodological imperatives.

Implementing e-learning and e-tools for care home staff supporting residents with dementia and challenging behaviour: A process evaluation of the ResCare study using normalisation process theory

Dementia-related symptoms, sometimes termed challenging or distressing behaviour, can give rise to significant distress in care homes. Individualised formulation-led interventions show promise in reducing these behaviours. ResCare, a cluster randomised controlled trial in England, tested an online individualised intervention, comprising e-learning and decision support e-tools, designed to enable staff to better support residents with such symptoms. Normalisation process theory was used to understand the implementation processes. We analysed contextual process data for all 27 ‘intervention’ care homes and identified three implementation mechanisms. These were examined for four illustrative case study homes. Seven qualitative interviews with care home staff and one interview with two research therapists informed this understanding. The main barrier to implementation was difficulty in conveying a sustained understanding of the value of individually tailored interventions. Emphasis was placed on training rather than practice change. Implementation seemed easier in smaller homes and in those with flexible managerial styles where transfer of knowledge and skill might have been easier to achieve. Take up of e-learning and e-tools proved hard. There may be a need to continually promote ‘buy-in’ of the potential benefits of individualised formulation-led interventions, and this would have to be congruent with other priorities. Interventions within care homes need to consider organisational readiness, capacity for innovation and ongoing appraisal and adjustment to maintain changes in practice.