“Hitting the spot”: Developing individuals with lived-experience of health and social care as facilitators to deliver a course to enhance public involvement in research – a Welsh perspective

Meudell, Alan; Jones, Siân; Simon, Natalie; Hunter, Zoe; Moore, Barbara; Elliott, Jim; Casey, Dawn

doi:10.1186/s40900-017-0057-z

Cited by 2 publications

(4 citation statements)

References 5 publications

(2 reference statements)

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“…Various organizations offer training in PE. The process of co-producing PE training programs or curricula is not frequently captured in the literature; however, there are examples that document the value-add in co-producing a training program with patients and members of the public [12, 13]. Moreover, the facilitation of PE training by patients and the public has also been demonstrated to enrich the process and outcomes [13].…”

Section: Introductionmentioning

confidence: 99%

Co-building a patient-oriented research curriculum in Canada

Bell

Vat

McGavin³

et al. 2019

Res Involv Engagem

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Plain English summaryFoundations in Patient-Oriented Research is a course designed and piloted in Canada to help patients, researchers, health care professionals and health system decision-makers gain an introductory understanding of patient-oriented research, the research enterprise, and how to work in a team. The course curriculum was co-developed by a diverse group of people with different lived experiences and relevant expertise. The course is meant to be delivered in a ‘co-learning format’ with classes comprised of all the above stakeholder groups learning together. The purpose of this study was to explore the experiences of the project leaders, developers, facilitators and patient co-facilitators who were involved in the process of co-developing, piloting and revising the curriculum.Our findings suggest that co-developing a patient-oriented research curriculum increases its quality, uptake and credibility. The co-development process not only resulted in training that benefited the target learners, but it provided valuable learning experiences about patient-oriented research for the project leaders, developers, facilitators and patient co-facilitators. These findings and the resulting recommendations may provide guidance for other learning and development groups wishing to undertake a similar project.Abstract Background Foundations in Patient-Oriented Research is a course designed and piloted in Canada to build mutually beneficial relationships for conducting patient-oriented research by ensuring that relevant stakeholders – patients, researchers, health care professionals and health system decision-makers – have a common foundational understanding of patient-oriented research, the research enterprise, and team dynamics. The curriculum was co-developed by a group of patients, researchers, patient engagement experts and curriculum development experts and involved consultations with broader groups of the relevant stakeholders mentioned above. It was designed to be delivered in a ‘co-learning format’ with classes comprised of all stakeholder groups learning together. The purpose of this study was to explore the experiences of individuals involved in the process of co-developing, piloting and revising Foundations in Patient-Oriented Research. Methods An embedded case study was conducted with individuals who were involved in the co-development, pilot and revision of Foundations in Patient-Oriented Research. These individuals took on different roles during the curriculum development process, including project co-lead, developer, facilitator, and patient co-facilitator. The constant comparison method was used to inductively develop themes from the two focus group sessions. Results Discussions from the focus groups revealed the value of co-building the content, co-facilitating the course sessions, and the importance of the co-learning format. The training itself was perceived as valuable and the systematic approach to co-development was perceived as a success. Several barriers were identified, including the amount of...

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Section: Introductionmentioning

confidence: 99%

Co-building a patient-oriented research curriculum in Canada

Bell

Vat

McGavin³

et al. 2019

Res Involv Engagem

View full text Add to dashboard Cite

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“…, 2018). Structures include developing a PPI framework (Hervey, 2011); a memorandum of understanding (Meudell et al. , 2017); a dedicated User Involvement Worker to ensure routine involvement (Hervey, 2011) and a communication plan (Minogue et al ., 2019).…”

Section: Resultsmentioning

confidence: 99%

“…Another decision rests on the funding available or opportunities for raising (Hudson, 2015); forums/fora (ibid; Keenan et al, 2019) and hubs (Mader, et al, 2018). Structures include developing a PPI framework (Hervey, 2011); a memorandum of understanding (Meudell et al, 2017); a dedicated User Involvement Worker to ensure routine involvement (Hervey, 2011), and a communication plan (Minogue, Cooke, Donskoy & Vicary, 2019). Reporting on different NHS approaches, Croft, Currie and Staniszewska (2016) found PPI was implemented variably within the same NHS organisation due to managerial rather than professional imperatives.…”

Section: Building Infrastructures and Organising The Involvement Of P...mentioning

confidence: 99%

“…Ways to promote involvement include setting-up panels (GamCare, 2020; Evans et al, 2019;Thompson et al, 2012); steering groups/committees (Mathie et al, 2014); research development groups (Fothergill et al, 2013); citizen juries (Gooberman-Hill, 2014;Gooberman-Hill et al, 2008); focus groups (Hoole and Morgan, 2011); reference groups (Hudson, 2015); forums/fora (Hudson, 2015;Keenan et al, 2019) and hubs (Mader et al, 2018). Structures include developing a PPI framework (Hervey, 2011); a memorandum of understanding (Meudell et al, 2017); a dedicated User Involvement Worker to ensure routine involvement (Hervey, 2011) and a communication plan (Minogue et al, 2019). Reporting on different NHS approaches, Croft et al (2016) found PPI was implemented variably within the same NHS organisation due to managerial rather than professional imperatives.…”

Section: Building Infrastructures and Organising The Involvement Of P...mentioning

confidence: 99%

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Transferable learning about patient and public involvement and engagement in gambling support services from health and social care: findings from a narrative review and workshop with people with lived experience

Norrie

Bramley

Lipman

et al. 2022

JICA

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PurposeThe involvement of patients or members of the public within public health, health and social care and addictions services is growing in the UK and internationally but is less common in gambling support services. The purpose of this study was to explore Patient and Public Involvement (PPI) infrastructures and engagement channels used in health and care services and debate their transferability to the gambling support sector (including research, education and treatment).Design/methodology/approachA narrative review examined data from six English language electronic databases, NHS evidence and grey literature covering the period 2007–2019. We identified 130 relevant items from UK literature. A workshop was held in London, England, with people with lived experience of gambling harm to seek their views on and applicability of the review findings to gambling services.FindingsSynthesis of literature and workshop data was undertaken. Main themes addressed “What works” in relation to: building infrastructures and organising involvement of people with lived experience; what people want to be involved in; widening participation and sustaining involvement and respecting people with lived experience.Practical implicationsExamination of the literature about involvement and engagement of patients, service users and the public in public health, health and social care and addiction services provides potentially useful examples of good practice which may be adopted by gambling services.Originality/valueThe involvement of people with lived experience of gambling harms in gambling support services is under-explored, with little published evidence of what constitutes good practice amongst self-organising groups/networks/grassroots organisations or rights-based/empowerment-based approaches.

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“Hitting the spot”: Developing individuals with lived-experience of health and social care as facilitators to deliver a course to enhance public involvement in research – a Welsh perspective

Cited by 2 publications

References 5 publications

Co-building a patient-oriented research curriculum in Canada

Co-building a patient-oriented research curriculum in Canada

Transferable learning about patient and public involvement and engagement in gambling support services from health and social care: findings from a narrative review and workshop with people with lived experience

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