Experience, knowledge and evidence: a comparison of research relations in health and anthropology

J Health Serv Res Policy

Mathie

Poland

et al. 2018

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.

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

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

J Health Serv Res Policy

Mathie

Poland

et al. 2018

“…6 The 2008 Health and Social Care Act consolidated legislation around PPI in the health service and health research, and in a relatively short time PPI has become embedded within the main UK health research funding streams, regulators and medical Royal Colleges. 52 Researchers applying to NIHR and most medical charity funding streams are now required to demonstrate how PPI has shaped the research proposal and how service users and the public will continue to be involved in the study.…”

Section: Patient and Public Involvement: The Moral Argumentmentioning

confidence: 99%

“…194 Criticisms of PPI include tokenism and power asymmetries between researcher and lay representative. 27,52,173 However, Ben-Ari and Enosh 194 suggest that focusing on such exchanges is too simplistic and that, within health research, reciprocity between researcher and the lay representative occurs less through the exchange of gifts and privileges, but more through sharing an issue of common concern or interest, reflecting the notion of mutual gain. 195 This was certainly evident in some of our case studies: PPI representatives willingly gave up their time to contribute to a project for which they could see longer-term benefits.…”

Section: Reciprocitymentioning

confidence: 99%

ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

Mathie

Keenan

et al. 2015

Health Serv Deliv Res

226

281

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.

“…While incentives clearly trigger increased operationalisation of PPEI such as in research 164 and general practice, 141,160 this does not necessarily lead to a scenario where PPEI is normalised. As data collection completed, structures for PPEI had yet to embed within the new infrastructure; however, some case studies provided more evidence of work around this embedding than others.…”

Section: Mapping the Case Studies Against The 'Ideal'mentioning

confidence: 99%

Commissioning for long-term conditions: hearing the voice of and engaging users – a qualitative multiple case study

Peckham

Health Services and Delivery Research

Williams

et al. 2014

BackgroundSome 15 million people in England have a long-term condition (LTC) but there is concern about whether or not the NHS meets their needs. To address this, consecutive governments have developed policies aimed at improving service delivery and patient and public engagement and involvement (PPEI). There has been little research that examines the impact or benefit of PPEI in commissioning. This project explored the role and impact of PPEI in commissioning for people with LTCs. The research was undertaken during a period of substantial change in the English NHS, which enabled us to observe how the NHS reforms in England impacted on approaches to PPEI.AimThe aim was to examine how commissioners enable voice and engagement of people with LTCs and identify what impact this has on the commissioning process and pattern of services. Our specific objectives were to (1) critically analyse the relationship between the public/patient voice and the impact on the commissioning process; (2) determine how changes in the commissioning process reshape local services; (3) explore whether or not any such changes in services impact on the patient experience; (4) identify if and how commissioners enable the voice and engagement of people with LTCs; and (5) identify how patient groups/patient representatives get their voice heard and what mechanisms and processes patients and the public use to make their voice heard.MethodsWe used a case study design examining the experience of PPEI in three LTC groups – diabetes, rheumatoid arthritis and neurological conditions – through three in-depth case studies. Our approach involved reviewing practice across the UK and then focusing on three geographical areas to examine practices of commissioning health care for people with LTCs, approaches to PPEI, patterns of services for people with LTCs and the activities of local patient and voluntary organisations for people with LTCs. The research had five phases and involved participatory and interactive methods of data collection and analysis.FindingsWe identified two key areas where improvements to practice in relation to PPEI can be made. The first relates to the framework or infrastructure arrangements for PPEI and how PPEI can be supported in the NHS and other organisations. To combat short-termism and the fragility of PPEI activities, sufficient resources need to be invested in developing shared understandings and sustaining relationships and infrastructures. The second area of action relates to the process for PPEI and how it should be undertaken.ConclusionAction needs to be taken by organisations at both national and local levels. PPEI is a circular process and, in itself, extremely fragile. This circular process can be ‘virtuous’– successful engagement leads to improved involvement and outcomes. However, where involvement is tokenistic or ends, patients and the public become disengaged and less involved and can be described as a ‘vicious circle’. In addition, we identified a number of key methodological issues and areas for further research that should be considered by research funders and researchers undertaking research in the area of PPEI, including a need for research on PPEI with young people.FundingThe National Institute for Health Research Health Services and Delivery Research programme.