Patients and professionals as research partners: Challenges, practicalities, and benefits

Hewlett, Sarah; Wit, Marteen de; Richards, P. Scott; Quest, Enid; Hughes, Rod; Heiberg, Turid; Kirwan, John R.

doi:10.1002/art.22091

Cited by 230 publications

(325 citation statements)

References 6 publications

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“…88,97 PPI not only increases researchers' confidence in their studies 72 but perhaps most importantly fosters their greater understanding of the service user or patient perspective. 81,98 The evidence base for patient and public involvement in research…”

Section: Patient and Public Involvement: The Methodological Argumentmentioning

confidence: 99%

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

Wilson

Mathie

Keenan

et al. 2015

Health Serv Deliv Res

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: Patient and Public Involvement: The Methodological Argumentmentioning

confidence: 99%

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

Wilson

Mathie

Keenan

et al. 2015

Health Serv Deliv Res

230

281

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“…All titles were reviewed by the first author (CF) and 10% (randomly selected) of the titles returned by the search and 10% (randomly selected) of the papers reviewed in full were independently reviewed (JK) to ensure consistency in agreement. The findings were reviewed and interpreted by the research team, which included a patient research partner (RN) (Hewlett et al, 2006). The analysis of the included studies focussed on the primary data presented in the papers rather than relying on the authors' interpretations.…”

Section: Processmentioning

confidence: 99%

Men, rheumatoid arthritis, psychosocial impact and self-management: A narrative review

et al. 2016

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Rheumatoid arthritis (RA) is a chronic disease affecting fewer men than women. We systematically reviewed the literature on impact and self-management of RA men. Twenty eight papers were included, and grouped into two categories: Psychosocial impact of RA;and Coping and self-management. This review finds gender differences relating to quality of life; work; distress; self-management; coping; and support. We conclude there is a dearth of literature focussing on RA men only, and mixed gender studies include insufficient men to draw strong conclusions about men. Thus, further research is needed to understand the support needs of men with RA in depth.3

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“…NHS-based research can be challenging; the NHS is a large and complex organizsation, with varying practises in different hospitals and wards, and an array of areas where design might be applied [26,31,32]. The principle for D4D was to create 'technology pull' into the NHS, targeting real user needs rather than being driven by technology or academic areas of interest [33].…”

Section: Identifying the Unmet Needmentioning

confidence: 99%

User-centred health design: reflections on D4D’s experiences and challenges

Moody

2015

Journal of Medical Engineering & Technology

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Patients and professionals as research partners: Challenges, practicalities, and benefits

Cited by 230 publications

References 6 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

Men, rheumatoid arthritis, psychosocial impact and self-management: A narrative review

User-centred health design: reflections on D4D’s experiences and challenges

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