Involving patients in clinical research: the <scp>T</scp>elescot <scp>P</scp>atient <scp>P</scp>anel

Fairbrother, Peter; McCloughan, Lucy; Adam, Geraldine; Brand, Richard; Brown, Cecil; Watson, M.; Cotter, Nicola; MacKellaig, Juliet M.; McKinstry, Brian

doi:10.1111/hex.12132

Cited by 11 publications

(10 citation statements)

References 13 publications

(13 reference statements)

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“…Through our reflective process, we identified some problems with this approach, such as a lack of clarity about what was expected of the community representatives, as well as concerns around some topics or tasks feeling irrelevant or inappropriate for them to be involved with. Recommendations emerging from our study therefore reinforce the value of the more conventional approach of formalizing individuals’ roles through negotiated role descriptions …”

Section: Discussionmentioning

confidence: 56%

“…Previous reflective reports and PI guidelines have recommended the use of developing and providing role descriptions for PI members. In our study, we tried an alternative approach of role development, in which community representatives were encouraged to be involved in any aspect of the project that felt appropriate without formal training, allowing roles to evolve more naturally within the team.…”

Section: Discussionmentioning

confidence: 99%

“…Insights from reflective studies can also make valuable contributions to debates around best practice in PI. For instance, whilst many researchers have emphasized the importance of providing clear role descriptions in PI, there are more mixed views as to whether members of the public should be given training in the roles they undertake. Some consider this to be essential to effective PI, whilst others argue that it is unreasonable to assume that somebody with little or no research background would be able to master the higher levels of skill and understanding required for some research‐related tasks .…”

Section: Introductionmentioning

confidence: 99%

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Openness, inclusion and transparency in the practice of public involvement in research: A reflective exercise to develop best practice recommendations

Brown

Dickinson

Smith³

et al. 2017

Health Expectations

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ContextReflective accounts of public involvement in research (PI) are important for helping researchers plan and deliver more effective PI activities. In particular, there is a need to address power differentials between team members that can prohibit effective and meaningful involvement.ObjectiveTo critically reflect on the PI practices that underpinned our research project on intimacy and sexuality in care homes, to develop a series of recommendations for improving future PI activities.SettingThe research team comprised five academics from nursing, public health, sociology and psychology, and two members of the public with experience of sex education, and lesbian, gay, bisexual and trans issues in older populations. In order to address power differentials within the group, we developed an approach to PI practice that was grounded in values of openness, inclusion and transparency.MethodReflective commentaries on the strengths and weaknesses of the team's approach to PI were gathered through interviews and open‐ended questionnaires with research team members. These views were collated and discussed at a workshop comprising research team members and an additional member of the public to generate recommendations for future PI practice.ResultsA number of strengths and limitations of our approach to PI were identified. Clear recommendations for improving PI practice were developed for three broad areas of identified difficulty: (i) communication within and between meetings; (ii) the roles and responsibilities of team members; and (iii) PI resources and productivity.Discussion and conclusionThese recommendations add to the developing body of guidance for conducting effective PI.

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Section: Discussionmentioning

confidence: 56%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Openness, inclusion and transparency in the practice of public involvement in research: A reflective exercise to develop best practice recommendations

Brown

Dickinson

Smith³

et al. 2017

Health Expectations

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“…The article repository contained 976 potentially relevant articles and our search of the grey literature identified 14 additional articles (N = 990), of which 935 (94.4%) were excluded (see flow diagram Figure ). The remaining 55 (5.6%) articles described the conceptual foundations of patient stakeholder engagement in research and best practice recommendations or activities to support these efforts . A full description of the 55 articles can be found in Appendix .…”

Section: Resultsmentioning

confidence: 99%

Patient stakeholder engagement in research: A narrative review to describe foundational principles and best practice activities

Harrison

Auerbach

Anderson

et al. 2019

Health Expectations

141

188

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Background Health research is evolving to include patient stakeholders (patients, families and caregivers) as active members of research teams. Frameworks describing the conceptual foundations underlying this engagement and strategies detailing best practice activities to facilitate engagement have been published to guide these efforts. Objective The aims of this narrative review are to identify, quantify and summarize (a) the conceptual foundational principles of patient stakeholder engagement in research and (b) best practice activities to support these efforts. Search Strategy, Inclusion Criteria, Data Extraction and Synthesis We accessed a publicly available repository of systematically identified literature related to patient engagement in research. Two reviewers independently screened articles to identify relevant articles and abstracted data. Main Results We identified 990 potentially relevant articles of which 935 (94.4%) were excluded and 55 (5.6%) relevant. The most commonly reported foundational principles were “respect” (n = 25, 45%) and “equitable power between all team members” (n = 21, 38%). Creating “trust between patient stakeholders and researchers” was described in 17 (31%) articles. Twenty‐seven (49%) articles emphasized the importance of providing training and education for both patient stakeholder and researchers. Providing financial compensation for patient stakeholders’ time and expertise was noted in 19 (35%) articles. Twenty articles (36%) emphasized regular, bidirectional dialogue between patient partners and researchers as important for successful engagement. Discussion and Conclusions Engaging patient stakeholders in research as partners presents an opportunity to design, implement and disseminate patient‐centred research. This review creates an overarching foundational framework for authentic and sustainable partnerships between patient stakeholders and researchers.

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“…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. 73 Contributing to the design of interventions is reported as being an important aspect of PPI; examples include stroke research interventions 74 and advising on the timing of interventions within Parkinson's disease research. 75 PPI also has a role in ensuring that research tools are refined to more closely reflect the issues important for the target research population, 76 ensuring tools are culturally sensitive and designing measures of patient expectations of treatment.…”

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

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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Involving patients in clinical research: the Telescot Patient Panel

Cited by 11 publications

References 13 publications

Openness, inclusion and transparency in the practice of public involvement in research: A reflective exercise to develop best practice recommendations

Openness, inclusion and transparency in the practice of public involvement in research: A reflective exercise to develop best practice recommendations

Patient stakeholder engagement in research: A narrative review to describe foundational principles and best practice activities

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

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