A Blueprint for Involvement: Reflections of lived experience co-researchers and academic researchers on working collaboratively

Abstract

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.

Plain English summary

The Blueprint study worked with young co-researchers with lived experience to explore services in England and Wales for children and young people with common mental health problems like depression, anxiety and self-harm. Blueprint aimed to find out what services exist, how children, young people and their families find out about and access these services, what the services actually do, and whether they are helpful and offer value for money. Blueprint worked closely with McPin, a charity that works to support young people with lived experience get involved in research. Together we developed a training and mentoring package to support the co-researcher’s development and their preparation for the role which included research interviews with service users, parents/carers and service providers and data analysis. The co-researchers, research team and McPin worked together to reflect on the successes and challenges of this approach to research and the challenges of carrying out this work during a global pandemic. We have summarised what we have learnt about how best to enable and support co-researcher involvement to provide guidance to other researchers.