Consumer involvement in health research: a <scp>UK</scp> scoping and survey

Mathie, Elspeth; Wilson, Patricia M.; Poland, Fiona; McNeilly, Elaine; Howe, Amanda; Staniszewska, Sophie; Cowe, Marion; Munday, Diane; Goodman, Claire

doi:10.1111/ijcs.12072

Cited by 60 publications

(104 citation statements)

References 35 publications

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“…158 One co-researcher also submitted a piece on RAPPORT to Balance (Diabetes UK's patient magazine) in August 2013; it was published in May/June 2014. Further publications with PPI input are expected.…”

Section: Papersmentioning

confidence: 99%

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

Wilson

Mathie

Keenan

et al. 2015

Health Serv Deliv Res

Self Cite

223

281

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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.

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Section: Papersmentioning

confidence: 99%

“…Within the scoping we were unable to find evidence of any PPI in nearly half of the studies. Although within the normal parameters of an electronic survey, 158 the disappointing response rate of 28% means that the results from the survey must be treated with caution (see Chapter 8,…”

Section: Summary Of Key Findingsmentioning

confidence: 99%

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

Wilson

Mathie

Keenan

et al. 2015

Health Serv Deliv Res

Self Cite

223

281

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“…This may be unsurprising given that it has been argued that PPI in health research in the UK at least has been relatively 'invisible' despite the clear policy driver. 162 Public deliberation methods (e.g. citizens' juries) are increasingly being used in health policy and in health priority setting in the UK, the USA and Canada, but more research is needed to understand and measure their use and impact.…”

Section: Involving the Public And Service Users In Knowledge Mobilisamentioning

confidence: 99%

Mobilising knowledge to improve UK health care: learning from other countries and other sectors – a multimethod mapping study

Davies

Powell

Nutley

2015

Health Services and Delivery Research

112

176

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BackgroundThe past two decades have seen rich conceptual development and a wide variety of practical initiatives around research use or ‘knowledge mobilisation’, but so far there has been little systematic effort to map, conceptualise and learn from these initiatives, or to investigate the degree to which they are underpinned by contemporary thinking as set out in the literature. This gap is particularly apparent when looking at knowledge mobilisation at the ‘macro’ level, that is the strategies and activities of major research funders, major research producers and key research ‘intermediaries’.Aims and objectivesThe study had three key objectives with associated research questions: to map the knowledge mobilisation landscape in health care (in the UK and internationally) and in social care and education within the UK; to understand the models, theories and frameworks that underpin the approaches to knowledge mobilisation; and to learn from the success or otherwise of the strategies and approaches in use.MethodsThe study was multimethod and multiphased, with considerable interactivity between the different strands. Data were collected through a review of 71 published reviews on knowledge mobilisation; website review of the knowledge mobilisation activities of 186 agencies; in-depth interviews (n = 52) with key individuals in agencies; a web survey (response rate 57%;n = 106); and two stakeholder workshops (at months 6 and 16).FindingsWe identified a wide range of models, theories and frameworks used to describe knowledge mobilisation and created a conceptual map that highlights six domains of thinking and debate in the literature. The interview and survey data showed three broad, overlapping roles undertaken by agencies: developing and sharing research-based products; emphasising brokering; and focusing on implementation. The knowledge mobilisation approaches in use had been shaped by many factors but there was only limited use of the models, theories and frameworks from the literature. Participants saw formal evaluation of knowledge mobilisation activities as important but highly challenging. Rich formative experience was described but formal evaluation was relatively rare. Few agencies involved service users or members of the public in knowledge mobilisation activities. Working inductively from the study data we derived eight key archetypes or ‘bundles of knowledge mobilisation activities’ that could be used by agencies to explore their knowledge mobilisation activities, future strategies and stakeholder perspectives.ConclusionsKnowledge mobilisation could be enhanced by providing support to enable cross-sector and interagency learning, reflection on the conceptual basis of approaches and increased evaluation of knowledge mobilisation activities. Further research is needed to evaluate approaches to assessing research use and impact, on systems approaches to knowledge mobilisation, on sustaining and scaling-up approaches, and on applying a wider range of literatures to knowledge mobilisation. Further research would also be useful on the knowledge mobilisation archetypes and how they can work in complementary ways.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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“…165 It is increasingly being used as a retrospective explanatory framework whereby thematic findings from qualitative data can be mapped against the key constructs, 166,167 and has recently been used as a theoretical underpinning for PPI in research. 168 …”

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

confidence: 99%

“…These draw on the theoretical concepts developed by Barnes et al and Gibson et al [105][106][107][108][109] and the three main paradigmatic stances towards PPEI. 168 When explored through NPT concepts, 134,135 viewing PPEI by asking whether or not it is moral, whether or not it is approached methodologically and how the policy imperative is enacted begins to help to shape a potential evaluative frame for PPEI. Table 13 shows how this framework sets the context and analytical framework for considering PPEI, and provides possible applications in practice.…”

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confidence: 99%

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

Peckham

Wilson

Williams

et al. 2014

Health Services and Delivery Research

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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.

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Consumer involvement in health research: a UK scoping and survey

Cited by 60 publications

References 35 publications

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

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

Mobilising knowledge to improve UK health care: learning from other countries and other sectors – a multimethod mapping study

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

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