BackgroundPatient and public involvement (PPI) is a prerequisite for many funding bodies and NHS research ethics approval. PPI in research is defined as research carried out with or by the public rather than to, about or for them. While the benefits of PPI have been widely discussed, there is a lack of evidence on the impact and outcomes of PPI in research.ObjectivesTo determine the types of PPI in funded research, describe key processes, analyse the contextual and temporal dynamics of PPI and explore the experience of PPI in research for all those involved. Mechanisms contributing to the routine incorporation of PPI in the research process were assessed, the impact of PPI on research processes and outcomes evaluated, and barriers and enablers to effective PPI identified.DesignA three-staged realist evaluation drawing on Normalisation Process Theory to understand how far PPI was embedded within health-care research in six areas: diabetes mellitus, arthritis, cystic fibrosis, dementia, public health and learning disabilities. The first two stages comprised a scoping exercise and online survey to chief investigators to assess current PPI activity. The third stage consisted of case studies tracked over 18 months through interviews and document analysis. The research was conducted in four regions of England.ParticipantsNon-commercial studies currently running or completed within the previous 2 years eligible for adoption on the UK Clinical Research Network portfolio. A total of 129 case study participants included researchers and PPI representatives from 22 research studies, and representatives from funding bodies and PPI networks.ResultsIn the scoping 51% (n = 92) of studies had evidence of PPI and in the survey 79% (n = 80), with funder requirements and study design the strongest influence on the extent of PPI. There was little transparency about PPI in publicly accessible information. In case studies, context–mechanism–outcome configurations suggested that six salient actions were required for effective PPI. These were a clear purpose, role and structure for PPI; ensuring diversity; whole research team engagement with PPI; mutual understanding and trust between the researchers and lay representatives; ensuring opportunities for PPI throughout the research process; and reflecting on, appraising and evaluating PPI within a research study. PPI models included a ‘one-off’ model with limited PPI, a fully intertwined model in which PPI was fully embedded and an outreach model with lay representatives linking to broader communities. Enabling contexts included funder, topic/design, resources, research host, organisation of PPI and, most importantly, relationships. In some case studies, lack of coherence in defining PPI persisted, with evidence of a dual role of PPI representative/study participant. Evidence of PPI outcomes included changes to study design, improvements to recruitment materials and rates, and dissemination.ConclusionsSix salient actions were required for effective PPI and were characterised by a shared understanding of moral and methodological purposes of PPI, a key individual co-ordinating PPI, ensuring diversity, a research team positive about PPI input and fully engaged with it, based on relationships that were established and maintained over time, and PPI being evaluated in a proactive and systematic approach. Future work recommendations include exploring the impact of virtual PPI, cost analysis and economic evaluation of the different models of PPI, and a longer-term follow-up study of the outcomes of PPI on research findings and impact on services and clinical practice.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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.Abstract Background 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 PP...

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.

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ObjectivesTo 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.MethodsRealist 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.ResultsIn 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.ConclusionsWhile 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.

Company-community agreements are widely considered to be a practical mechanism for recognising the rights, needs and priorities of peoples impacted by mining, for managing impacts and ensuring that mining-derived benefits are shared. The use and application of company-community agreements is increasing globally. Notwithstanding the utility of these agreements, the gender dimensions of agreement processes in mining have rarely been studied. Prior research on women and mining demonstrates that women are often more adversely impacted by mining than men, and face greater challenges in accessing development opportunities that mining can bring. Nonetheless, there is currently little guidance for companies, government or communities in bringing a gender perspective to the fore in mining and agreement processes. It is undisputed in human development literature that investment in women and sensitivity to gender delivers long-term health, education and local development outcomes. In mining and development, a number of key factors remain unexplored. These include: women's participation in agreement processes, the gendered distribution of agreement benefits, and the extent to which impacts and benefits influence women's development and economic inclusion. This paper presents the results of the first phase of an applied research project undertaken by the Centre for Social Responsibility in Mining (CSRM) at The University of Queensland and funded by the Minerals Council of Australia (MCA) and the Department of Foreign Affairs and Trade (DFAT). The project sought to connect with experienced practitioners who had been directly involved in mining and agreement processes to document and analyse grounded perspectives on gender dynamics and agreements, and connect those experiences with the broader literature. Findings from this study have implications for the role of mining companies and governments in promoting gender equality and empowerment as part of their commitments to sustainable development. They also have implications for community groups and their representatives in terms of how they might engage in agreement processes to maximise women's participation and influence. In many social contexts, a key challenge will be navigating the territory of cultural norms and gender equality, particularly in cultures where women's influence in the public sphere is not strong. The authors argue that without consideration of a gender perspective, including gender's intersection with other factors such as class, race, poverty level, ethnic group and age, mining agreements will not be inclusive, may exacerbate gender inequalities, and fail to contribute to long-term sustainable development.

Background Patient and public involvement (PPI) is a requirement for UK health and social care research funding. Evidence for how best to implement PPI in research programmes, such as National Institute for Health Research (NIHR) Collaborations for Applied Health Research and Care (CLAHRCs), remains limited. This paper reports findings from an action research (AR) project called IMPRESS, which aims to strengthen PPI within CLAHRC East of England (EoE). IMPRESS combines AR with Normalisation Process Theory (NPT) to explore PPI within diverse case study projects, identifying actions to implement, test and refine to further embed PPI. Methods We purposively selected CLAHRC EoE case study projects for in-depth analysis of PPI using NPT. Data were generated from project PPI documentation, semi-structured qualitative interviews with researchers and PPI contributors and focus groups. Transcripts and documents were subjected to abductive thematic analysis and triangulation within case. Systematic across case comparison of themes was undertaken with findings and implications refined through stakeholder consultation. Results We interviewed 24 researchers and 13 PPI contributors and analysed 28 documents from 10 case studies. Three focus groups were held: two with researchers (n = 4 and n = 6) and one with PPI contributors (n = 5). Findings detail to what extent projects made sense of PPI, bought in to PPI, o perationalised PPI and appraised it, thus identifying barriers and enablers to fully embedded PPI. Conclusion Combining NPT with AR allows us to assess the embeddedness of PPI within projects and programme, to inform specific local action and report broader conceptual lessons for PPI knowledge and practice informing the development of an action framework for embedding PPI in research programmes. To embed PPI within similar programmes teams, professionals, disciplines and institutions should be recognised as variably networked into existing PPI support. Further focus and research is needed on sharing PPI learning and supporting innovation in PPI.

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