Assessment of the benefits of user involvement in health research from the Warwick Diabetes Care Research User Group: a qualitative case study

Lindenmeyer, Antje; Hearnshaw, Hilary; Sturt, Jackie; Ormerod, Ralph; Aitchison, Geoff

doi:10.1111/j.1369-7625.2007.00451.x

Cited by 70 publications

(102 citation statements)

References 10 publications

(24 reference statements)

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“…However, there was no evidence on how this affected research outcomes. This effect of PPI on study recruitment has been reported widely elsewhere, 70,[78][79][80][81][82][83][84][85][86]88 but the range of case studies within the RAPPORT study allows the specific components to be teased out ( Figure 19). …”

Section: Linking To the Wider Communitymentioning

confidence: 99%

“…77 However, the most frequently cited claim for the value of PPI is in recruitment to studies, 78 most commonly by ensuring that protocols and participant information are more relevant and accessible to participant groups. 70 PPI input is also seen as having importance in shaping the recruitment strategy by bringing local knowledge, 79 or important links to the target population. 80 There are also examples where PPI has contributed to accessing marginalised and seldom heard populations 81,82 and those with rare conditions, 83 and played a role in promoting acceptance of researchers by previously sceptical communities.…”

Section: Patient and Public Involvement: The Methodological Argumentmentioning

confidence: 99%

“…70,71 In particular, PPI is seen as being key to the development of plain English summaries as a requirement in many grant applications. 24,62 There are also claims that PPI improves the overall design in trials, 72 particularly by ensuring the design is acceptable for potential participants.…”

Section: Patient and Public Involvement: The Methodological Argumentmentioning

confidence: 99%

“…Recruitment was the most frequently mentioned area in which PPI was seen as having a 'visible' impact, and is a recurring focus in the literature. 70,[78][79][80][81][82][83][84][85][86] Recruitment processes were part of the overall research design and provided a natural entry for PPI. Case studies had evidence of PPI impact on other elements of the design such as choice of outcome measures, ensuring tools were participant-sensitive or involvement in developing the intervention.…”

mentioning

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

224

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 Communitymentioning

confidence: 99%

Section: Patient and Public Involvement: The Methodological Argumentmentioning

confidence: 99%

Section: Patient and Public Involvement: The Methodological Argumentmentioning

confidence: 99%

mentioning

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

224

281

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“…Face validation of a DMSES for the UK started by consulting with the Warwick Diabetes Research & Education User Group (WDREUG), a lay advisory group of 10-12 people living with diabetes, during two meetings over six months (Lindenmeyer et al, 2007). The WDREUG provided advice to ensure appropriate use of vocabulary (eg, blood glucose monitoring) and concepts (eg, confidence), which resulted in changes made to items, for example, diabetic diet was replaced by healthy eating pattern.…”

Section: Assessing Face Validitymentioning

confidence: 99%

Validity and reliability of the DMSES UK: a measure of self-efficacy for type 2 diabetes self-management

Sturt

Hearnshaw

Wakelin

2010

Primary Health Care

Self Cite

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Objectives: Self-efficacy is an important outcome measure of self-management interventions. We aimed to establish UK validity and reliability of the diabetes management self-efficacy scale (DMSES). Methods: The 20 item DMSES was available for Dutch and US populations. Consultation with people with type 2 diabetes and health professionals established UK content and face validity resulting in item reduction to 15. Participants were adults with type 2 diabetes enrolled in a randomised controlled trial (RCT) of the diabetes manual, a self-management education intervention, with an HbA1c over 7% and who understood English. Baseline trial data and follow-up control group data were used. Results: A total of 175 participants completed all 15 items. Pearson's correlation coefficient of 20.46 (P , 0.0001) between the DMSES UK and the problem areas in diabetes scale demonstrated criterion validity. Intra-class correlation between data from 67 of these participants was 0.77, demonstrating test-retest reliability. The correlation coefficients between item scores and total scores were .0.30. Cronbach's alpha was 0.89 over all items. Conclusion: This evaluation demonstrates that the scale has good internal reliability, internal consistency, construct validity, criterion validity, and test-retest reliability. Practice Implications: The 15 item DMSES UK is suitable for use in research and clinical settings to measure the selfefficacy of people living with type 2 diabetes in managing their diabetes.

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Mirroring, monitoring, modelling, belonging, and distancing: Psychosocial processes in an online support group of breast cancer patients

Montali

Zulato

Frigerio

et al. 2021

Journal Community Psychology

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Breast cancer patients are primary users of Internet Health Forums, virtual self‐help communities where they find and share information, preoccupations, and support. Previous literature has mainly focused on analysing the contents and the outcomes of breast cancer forums' participation. In light of the Community of Practice theoretical model, our research investigated the psychosocial processes that build and shape patients' experience and participation in the forum. We conducted 16 semi‐structured email interviews with breast cancer patients recruited within a well‐established online community. Thematic analysis identified five processes—mirroring, monitoring, modelling, belonging, and distancing—that marked three phases of users' experience: initiation, participation, detachment. An interactive dynamic characterised the identified processes: the disease's experience was shaped by and, in turn, it crafted this virtual community. These community processes contributed to participants' empowerment at practical, informative, and emotional levels through the development of a shared repertoire of resources, stories, and ways of dealing with patients' recurring problems.

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Assessment of the benefits of user involvement in health research from the Warwick Diabetes Care Research User Group: a qualitative case study

Cited by 70 publications

References 10 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

Validity and reliability of the DMSES UK: a measure of self-efficacy for type 2 diabetes self-management

Mirroring, monitoring, modelling, belonging, and distancing: Psychosocial processes in an online support group of breast cancer patients

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