Our latest publication with the Centre for Patient Reported Outcome Research (CPROR) team at the University of Birmingham and the TLC Study Group is a truly collaborative paper supported by Long COVID SOS, Long COVID Scotland and Long COVID Support who assisted with the recruitment of study participants and patient and public involvement and engagement (PPIE) members.
“Considerations for patient and public involvement and engagement in health research” evaluates the impact of PPIE in the ‘Therapies for Long COVID in non-hospitalised individuals’ (TLC) Study, using a combination of group discussions and interviews with patient partners and researchers. The authors go on to identify areas of good practice and reflect on areas for improvement for patients and researchers in future studies.
Abstract
Patient and public involvement and engagement (PPIE) can provide valuable insights into the experiences of those living with and affected by a disease or health condition. Inclusive collaboration between patients, the public and researchers can lead to productive relationships, ensuring that health research addresses patient needs.
Guidelines are available to support effective PPIE; however, evaluation of the impact of PPIE strategies in health research is limited. In this Review, we evaluate the impact of PPIE in the ‘Therapies for Long COVID in non-hospitalised individuals’ (TLC) Study, using a combination of group discussions and interviews with patient partners and researchers. We identify areas of good practice and reflect on areas for improvement.
Using these insights and the results of a survey, we synthesize two checklists of considerations for PPIE, and we propose that research teams use these checklists to optimize the impact of PPIE for both patients and researchers in future studies.