Involving People With Lived Experience in Electronic Health Record Database Studies Reflections and Learning From the...

Area of Science:

• Health Research Methodology
• Public and Patient Involvement
• Electronic Health Records

Background:

• Patient and Public Involvement and Engagement (PPIE) is crucial in health research, with increasing reporting of methods and impact.
• Reporting PPIE in studies using large, routinely collected electronic health record (EHR) data sets is less common.
• Involvement in EHR research presents unique challenges and fewer opportunities for influence compared to other research contexts.

Purpose of the Study:

• To report the patient and public involvement approach for a Clinical Practice Research Datalink (CPRD) study.
• To critically reflect on the process and impact of involving young people, parents, and carers in research using UK primary care EHR data.
• To share lessons learned for effective PPIE in EHR-based health research.

Main Methods:

• The CHOOSE study utilized the CPRD to investigate child and youth mental health diagnoses during the COVID-19 pandemic.
• A Lived Experience Advisory Panel (LEAP), comprising young people and parents/carers, informed the study.
• Involvement activities were facilitated by The McPin Foundation, a mental health research charity.

Main Results:

• Involving lived experience experts enhanced understanding and contextualization of findings, ensuring relevance to young people's lives.
• Challenges included the limitations of CPRD data, which did not capture all perceived important information.
• Researchers noted time constraints for PPIE, which were mitigated by support from The McPin Foundation.

Conclusions:

• This paper outlines a PPIE approach for an EHR database study, emphasizing collaborative work with young people and carers.
• Sufficient time, adequate resources, appropriate training, and support are essential for successful PPIE.
• Transparency regarding the limitations of PPIE in EHR research is important for managing expectations and maximizing impact.