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.

The INSIGHT project: reflections on the co-production of a quality recognition programme to showcase excellence in public involvement in health and care research

“…However, we learned that it was important to clarify roles and take time to explain the background and aims of the project at the beginning, particularly as it was recognised that these aims were ambitious. Similar to previous observations [ 50 ], adapting to the needs of individual public contributors was important and we identified that smaller group sessions outside the main TFGs was extremely valuable for some participants. In a systematic review of patient engagement in research, Domecq et al [ 1 ] also identified that spending adequate time to build reciprocal relationships between public contributors and researchers, fostering mutual respect and being clear on what is expected of public contributors were seen as important.…”

Perceptions of the key components of effective, acceptable and accessible services for children and young people experiencing common mental health problems: a qualitative study

“…Their interpretations of the data were informed not only by their lived experience of mental illness but also by their lived experience of being a young person. We have published a paper where we discuss our reflections on co-research and provide guidance for other researchers on how to enable and support co-researcher involvement [ 70 ].…”

Adolescent girls’ explanations of high rates of low mood and anxiety in their population: A co-produced qualitative study

“…More directly, our analysis highlights a need for those working with adolescent girls to create supportive, open spaces for nuanced conversations about the challenges they face, together with opportunities to bolster self-esteem and coping capacities. In research, policy, and practice, efforts to progress the agenda to improve girls' mental health can be best achieved through engagement with girls as key contributors to decision-making, as has been a key strength in our study; see, for instance, guidance and publications around conceptualising and reporting on co-produced health interventions and services [58,59].…”