Developing the evidence base of patient and public involvement in health and social care research: the case for measuring impact

Staniszewska, Sophie; Adebajo, Ade; Barber, Rosemary; Beresford, Peter; Brady, Louca‐Mai; Brett, Jo; Elliott, Jim; Evans, D.; Haywood, Kirstie L.; Jones, David A.; Mockford, Carole; Nettle, Mary; Rose, Diana; Williamson, Tracey

doi:10.1111/j.1470-6431.2011.01020.x

Cited by 132 publications

(157 citation statements)

References 26 publications

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“…The case for evaluating PPI impact draws upon the methodological case for the need to know what is working and what does not work well in PPI, 198 and the economic case, as PPI is relatively resource-intensive. 30 However, our survey and scoping, and previous systematic and structured reviews of PPI in research, showed that there is little recording of PPI activity and costs in publicly accessible research study information, and in published papers. 19,29 Our analysis of the case studies clearly showed that outcomes of PPI were far easier to identify than the mechanisms and context that led to them.…”

Section: Impact and Outcomes Of Patient And Public Involvementmentioning

confidence: 84%

“…Finally, concerns raised elsewhere that there is little systematic evaluation of PPI by researchers in their studies 21,30 were also highlighted in the RAPPORT study findings. Research teams that are already fully engaged with PPI and well resourced in terms of PPI staff and time are likely to work towards systematic evaluation of impact, for example as suggested by the PiiAF project.…”

Section: Key Conclusionmentioning

confidence: 99%

“…30 Not only is there a notable lack of evidence on outcomes and impact of PPI, 31 but what little there is tends to be observational evaluations which rarely consider the links between the context (when and where PPI happens), models of PPI (how it functions) and the outcomes of PPI (what difference it made). 32 As outlined in the next section, the RAPPORT study aimed to address these significant gaps in the evidence.…”

Section: Rationale For the Studymentioning

confidence: 99%

“…109 Providing a more robust evidence base for PPI policy requires moving beyond observational evaluations of PPI. 29,30 More conventional approaches to empirical evaluation would seek to examine whether or not programmes, interventions or innovations are effective using controlled trial designs to measure specified effects of each of a number of variables on outcomes. Although such designs are well suited to assess the effectiveness of clinical treatments, it has long been recognised 110 that such research designs are less able to identify how exactly variables combine to create outcomes 111 or to fully explain the processes through which programmes actually work.…”

Section: Staley's 2009mentioning

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

230

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: Impact and Outcomes Of Patient And Public Involvementmentioning

confidence: 84%

Section: Key Conclusionmentioning

confidence: 99%

Section: Rationale For the Studymentioning

confidence: 99%

Section: Staley's 2009mentioning

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

Self Cite

230

281

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“…This is further enhanced by the cultural awareness PPI offers, the potential for improving research design and data collection tools and the identification of areas of inquiry that might otherwise be overlooked. Staniszewaska et al (2011) add that further impact could be achieved by PPI in research by joint working on developing ways to measure impact.…”

Section: Patient Empowerment and Ppi Impactmentioning

confidence: 99%

How to empower patients, and involve the public

Piper

2014

Nursing Standard

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Individual empowerment and Patient and Public Involvement are a key focus for contemporary NHS policy in a quasi-market health economy concerned to emphasise patient decision making and representation as a feature of a customer focused NHS.Such language suggests a rebalancing of power in the nurse-patient relationship. The reality is it masks the wider issues of power and control in a complex health service of professional agendas and leadership, government targets and a business culture.Nevertheless, and despite these ideological and organisational constraints, there are ways in which nurses can facilitate aspects of individual patient empowerment and Patient and Public Involvement.

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Protocol: Assessing the impact of interest‐holder engagement on guideline development: A systematic review

Lytvyn,

Petkovic,

Khabsa

et al. 2024

Campbell Systematic Reviews

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This is the protocol for a Campbell systematic review. The objectives are as follows. The objective of this review is to identify and synthesize empirical research on the impacts of interest‐holder engagement on the guideline development process and content. Our research questions are as follows: (1) What are the empirical examples of impact on the process in health guideline development across any of the 18 steps of the GIN‐McMaster checklist? (2) What are the empirical examples of impact on the content in health guideline development across any of the 18 steps of the GIN‐McMaster checklist?

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Developing the evidence base of patient and public involvement in health and social care research: the case for measuring impact

Cited by 132 publications

References 26 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

How to empower patients, and involve the public

Protocol: Assessing the impact of interest‐holder engagement on guideline development: A systematic review

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