A service users’ research advisory group from the perspectives of both service users and researchers

Rhodes, Penny; Nocon, Andrew; Booth, Michael; Chowdrey, M. Y.; Fabian, Anne; Lambert, Neville; Mohammed, Faqir; Walgrove, Teresa

doi:10.1046/j.1365-2524.2002.00376.x

Cited by 57 publications

(100 citation statements)

References 11 publications

(17 reference statements)

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“…While for some it improved understanding about their condition or services they could access, for most the increased sense of self-worth and confidence was most frequently reported. This echoes other studies 87,93,212,213 and was particularly marked in people who because of retirement, unemployment or family caring roles were grateful for the mental stimulation provided through the PPI role. Moreover, this role opened up further opportunities for them, with many describing a career trajectory of PPI.…”

Section: Linking To the Wider Communitysupporting

confidence: 76%

“…82 The impact of PPI has a moral dimension in the reported outcomes for service users and the public involved in the study. This includes an increased sense of self-worth, 87,93 peer support, 94 improved quality of life 95,96 and acting as a stepping stone to employment. 88 Being involved with a research team also provides service users and the public with a means of becoming more knowledgeable about health conditions, services and the research process.…”

Section: Patient and Public Involvement: The Methodological Argumentmentioning

confidence: 99%

“…88 Being involved with a research team also provides service users and the public with a means of becoming more knowledgeable about health conditions, services and the research process. 58,93,95 Within community-based public health research, benefits of PPI are also reported in enhancing the capacity of community-based organisations to raise their value to their communities. 86 Finally, there are claims that PPI brings benefits to researchers beyond just the research study.…”

Section: Patient and Public Involvement: The Methodological Argumentmentioning

confidence: 99%

See 2 more Smart Citations

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

Wilson

Mathie

Keenan

et al. 2015

Health Serv Deliv Res

226

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: Linking To the Wider Communitysupporting

confidence: 76%

Section: Patient and Public Involvement: The Methodological Argumentmentioning

confidence: 99%

Section: Patient and Public Involvement: The Methodological Argumentmentioning

confidence: 99%

See 1 more Smart Citation

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

Wilson

Mathie

Keenan

et al. 2015

Health Serv Deliv Res

226

281

View full text Add to dashboard Cite

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“…The literature already describes a range of benefits resulting from the use of community based research (see Kai and Hedges 1999, Rhodes et al 2002, Rowe 2006) and many were similarly reported here.…”

Section: Benefits Associated With Working As a Researchersupporting

confidence: 62%

Using community-based research within regeneration. The role of the researcher within community-based approaches – exploring experiences within Objective 1 South Yorkshire

Warwick-Booth

2013

Community, Work & Family

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“…Nevertheless, from the small number of varied qualitative studies appraised (n = 9), a number of themes emerged. Involvement initiatives led to some positive outcomes for the service users involved: increasing knowledge, self-confidence and self-esteem, [90][91][92] with a resulting increased capacity to become involved with decision-making.…”

Section: Patient and Public Involvement Influencing Commissioning Decmentioning

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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A service users’ research advisory group from the perspectives of both service users and researchers

Cited by 57 publications

References 11 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

Using community-based research within regeneration. The role of the researcher within community-based approaches – exploring experiences within Objective 1 South Yorkshire

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

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