CHOOSE - CHildren and yOung peOple pSychiatric diagnoses before and during the Covid-19 pandEmic

Problem

Involving people with lived experience in health research is widely reported, particularly in mental health studies and those using qualitative methods. Published examples of PPIE (patient and public involvement and engagement) in systematic reviews and PhD studies are becoming increasingly common. The role and value of PPIE in health research involving examination of large electronic health record datasets, such as the Clinical Practice Research Datalink (CPRD), is not widely reported.

Approach

The CHOOSE study (CHildren and yOung peOple pSychiatric diagnoses before and during the Covid-19 pandEmic) aimed to explore mental illness diagnoses and self-harm episodes among children and young people in UK primary care records before and during the COVID-19 pandemic. We sought to provide recommendations for young people, parents and for healthcare, social care and educational services. The study was informed by the involvement of two groups: Lived experience advisory group: members recruited by our collaborator McPinR (mental health research charity) that co-ordinated the involvement of young people and parents/carers. We held five advisory group meetings. Stakeholder group: teachers, healthcare professionals, third sector practitioners with an interest in young people’s mental health. Two online meetings were held.The study aims, protocol, limitations of using CPRD, findings and their implications, and dissemination were discussed at all meetings. Members of both groups were invited to join a consensus group discussion to determine the key findings, messages and outputs to key audiences. A webinar, co-chaired by a young person, with contributions from young people and parents, was a key dissemination activity. Outputs were co-produced with young people and parents/carers.Researchers reflected on lay and stakeholder perspectives throughout the study, notes were made and distributed after meetings, including a “you said, we did” table. This approach helped to ensure integration of young person, parent and stakeholder perspectives, as well as providing transparency and feedback to the groups as to how researchers responded to discussions.

Findings

Involving young people, families and other stakeholders enhanced methodological rigour, interpretation of data and dissemination of findings. Challenges included the fixed nature of CPRD data, which often does not reflect what people perceive to be important – questions that could not be responded to using CPRD were identified; time-related pressures, and the need for support for young people and parents/carers. The latter were managed with support from McPinR through the provision of notes and feedback after meetings, and communication between meetings.

Consequences

We will critically reflect on the process and potential impact of involving young people, parents/carers and other stakeholders in research conducted using large datasets of this type. We will discuss the challenges and opportunities encountered, strategies to facilitate PPIE involvement in CPRD studies. The co-produced dissemination outputs will be shown at the conference.