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A blueprint for Involvement: reflections of lived experience co-researchers and academic researchers on working collaboratively

Fraser, Claire, Carrington, Bekah, Crooks, Jodie, Diffey, James, Evans, Nicola ORCID:, Kirk, Sue, Lane, Rhiannon, McGowan, Rose, Naughton, Georgia, Pryjmachuk, Steven, Saund, Keeya and Temple, Rachel 2022. A blueprint for Involvement: reflections of lived experience co-researchers and academic researchers on working collaboratively. Research Involvement and Engagement 8 (1) , 68. 10.1186/s40900-022-00404-3

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Patient and public involvement in health research is important to ensure that research remains relevant to the patient groups it intends to benefit. The UK NIHR funded Blueprint study aimed to develop a ‘model’ of effective service design for children and young people with common mental health problems. To ensure Blueprint’s findings were rooted in lived experience and informed by different perspectives, six young adults with lived experience of mental health issues were recruited, trained and employed as co-researchers to work alongside academic researchers . Blueprint collaborated with a third sector partner (McPin) to recruit, employ and mentor the co-researchers and deliver a bespoke training and mentoring package to support their development. Since Blueprint’s scheduled work plan was significantly impacted by the Covid-19 pandemic, planned co-researcher activities had to be adapted to accommodate distance learning and remote fieldwork and analysis. Blueprint’s co-researchers, academic researchers and a representative of McPin collaboratively used a process of reflexivity and thematic analysis to capture Blueprint’s involvement journey. We identified numerous benefits but also challenges to involvement, some of which were exacerbated by the pandemic. Navigating and overcoming these challenges also allowed us to collectively identify key guidelines for involvement for the wider research community which focus on enabling access to involvement, supporting co-researchers and optimising involvement for the benefit of co-researchers and research teams. This paper presents an overview of the Blueprint involvement journey from co-researcher, academic researcher and McPin perspectives, sharing our learning from the recruitment, training, fieldwork and analysis phases in order to inform the knowledge base on lived experience involvement and provide guidance to other researchers who seek to emulate this approach.

Item Type: Article
Date Type: Published Online
Status: Published
Schools: Healthcare Sciences
Publisher: BioMed Central
ISSN: 2056-7529
Date of First Compliant Deposit: 14 February 2023
Date of Acceptance: 18 November 2022
Last Modified: 04 May 2023 06:58

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