An analysis of the <scp>R</scp>esearch <scp>T</scp>eam–<scp>S</scp>ervice <scp>U</scp>ser relationship from the <scp>S</scp>ervice <scp>U</scp>ser perspective: a consideration of ‘<scp>T</scp>he <scp>T</scp>hree <scp>R</scp>s’ (Roles, Relations, and Responsibilities) for healthcare research organisations

Jordan, Melanie; Rowley, Emma; Morriss, Richard; Manning, Nick

doi:10.1111/hex.12243

Cited by 11 publications

(22 citation statements)

References 15 publications

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“…Seventeen frameworks (from United States, Canada, Australia, UK, the Netherlands and Belgium) were classified as predominantly partnership‐focused, in that they were explicitly designed to optimize collaborative partnerships between researchers and lay people or lay organizations and measure key dimensions of partnership success—preferably quantitatively and reproducibly. Most such frameworks placed particular emphasis on governance, public release of data (transparency) and accountability.…”

Section: Resultsmentioning

confidence: 99%

“…A total of 56 frameworks were written up in 55 academic papers. 5,10,12,31,[33][34][35][36][38][39][40][41][42][43][44][45][47][48][49][50]52,53,[55][56][57][60][61][62][63][64][65][66][67][69][70][71][72][73][74][75][76][77][78][79][80][81][82][83][84][87][88][89][90]…”

Section: Description Of Data Setmentioning

confidence: 99%

“…98 A number of academic-lay partnerships have produced similar frameworks, typically as a result of hybrid funding from academic, service and patient organizations. 31,41,55,[59][60][61]77,79,82,84,85,91 Common themes in this category included governance mecha- Table 3, and the standards are reproduced in full in the Appendix S1.…”

Section: Partnership-focused Frameworkmentioning

confidence: 99%

“…Power-focused frameworks were rarely used directly, but they informed and underpinned subsequent work on more applied categories of framework. 46,51,58 Some but not all priority-setting, 46,78,85 study-focused [79][80][81] and partnershipfocused 31,38,55,58,59,61,82,84 frameworks went on to be used by the groups that developed them, but very few had evidence of adoption by other groups. One framework was promoted by the UK Health Technology Assessment programme as "best practice."…”

Section: Evidence Of Framework Usementioning

confidence: 99%

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Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilot

Greenhalgh

Hinton

Finlay

et al. 2019

Health Expectations

572

650

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Background Numerous frameworks for supporting, evaluating and reporting patient and public involvement in research exist. The literature is diverse and theoretically heterogeneous. Objectives To identify and synthesize published frameworks, consider whether and how these have been used, and apply design principles to improve usability. Search strategy Keyword search of six databases; hand search of eight journals; ancestry and snowball search; requests to experts. Inclusion criteria Published, systematic approaches (frameworks) designed to support, evaluate or report on patient or public involvement in health‐related research. Data extraction and synthesis Data were extracted on provenance; collaborators and sponsors; theoretical basis; lay input; intended user(s) and use(s); topics covered; examples of use; critiques; and updates. We used the Canadian Centre for Excellence on Partnerships with Patients and Public (CEPPP) evaluation tool and hermeneutic methodology to grade and synthesize the frameworks. In five co‐design workshops, we tested evidence‐based resources based on the review findings. Results Our final data set consisted of 65 frameworks, most of which scored highly on the CEPPP tool. They had different provenances, intended purposes, strengths and limitations. We grouped them into five categories: power‐focused; priority‐setting; study‐focused; report‐focused; and partnership‐focused. Frameworks were used mainly by the groups who developed them. The empirical component of our study generated a structured format and evidence‐based facilitator notes for a “build your own framework” co‐design workshop. Conclusion The plethora of frameworks combined with evidence of limited transferability suggests that a single, off‐the‐shelf framework may be less useful than a menu of evidence‐based resources which stakeholders can use to co‐design their own frameworks.

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Section: Resultsmentioning

confidence: 99%

Section: Description Of Data Setmentioning

confidence: 99%

Section: Partnership-focused Frameworkmentioning

confidence: 99%

Section: Evidence Of Framework Usementioning

confidence: 99%

See 2 more Smart Citations

Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilot

Greenhalgh

Hinton

Finlay

et al. 2019

Health Expectations

572

650

View full text Add to dashboard Cite

show abstract

“…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%

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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In it for the long haul: a reflective account of collaborative involvement in aphasia research and education

Horton

Barnston

et al. 2021

Aphasiology

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Background:The involvement of service users and supporters/ advocates in healthcare education and healthcare research has developed an increasingly high profile in recent years, but relatively little is known about collaborations involving people with aphasia and family members. Aims: To reflect on and learn from the experience of collaboration, examining the ways in which the involvement of people with aphasia and family members was carried out over a fifteen-year period in the context of a UK university. Methods and procedures: We have taken a reflective longitudinal case study approach, and used constructs from implementation theory as sensitizing concepts in a cross-sectional analysis of documents in four key activities: the Conversation Partner scheme; Reaching Further Out; Supported Communication to Improve Participation in Rehabilitation; the Aphasia Research Collaboration. We then produced narrative accounts which run through the whole period of the study. Through this process, we as authors also reflected on our own experiences of collaboration. Outcomes and results: Conversation Partners (CP), integrated into the speech and language therapy practice placement, was the basis for almost all subsequent involvement. We deepened and strengthened the scope of the CP collaboration through funded workshops -Reaching Further Out -facilitated by Connect. Increasing the visibility of our collaboration enabled us to attract institutional support to develop our first major research undertaking, where people with aphasia played a key role in highlighting the need for the study, developing and implementing the intervention, taking part in project oversight, and helping disseminate the findings. The Aphasia Research Collaboration began as a partnership between speech and language therapy students and people with aphasia and has continued in various forms. Four narrative threads run through the period of this study: the importance of systems and people being adaptable; the contribution of leadership and commitment to continuity; a commitment to act and learn together; the importance of understanding value.

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An analysis of the Research Team–Service User relationship from the Service User perspective: a consideration of ‘The Three Rs’ (Roles, Relations, and Responsibilities) for healthcare research organisations

Cited by 11 publications

References 15 publications

Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilot

Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilot

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

In it for the long haul: a reflective account of collaborative involvement in aphasia research and education

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