Good quality health research will involve members of the public to ensure that the work is relevant and valuable to potential beneficiaries; this is called patient and public involvement and engagement (PPIE). It is not the same as recruiting volunteers to take part in research as participants. It is more about doing research with members of the public who may have personal experience of the issues addressed by research (e.g., are a parent, or access certain health services). With the OPTIMA study, we felt that it was vital that parents who might use the STEPS app were actively involved in its development and the planning of the wider OPTIMA programme.
OPTIMA has a PPIE panel, which is made up of 8 parents who have experience of the referral process for child mental health or behavioural support services. The panel meets remotely on a regular basis, but members also complete work independently in their own time; they are paid for their time. The panel will continue to work with the OPTIMA team throughout the full randomised control trial (RCT). Tasks they have undertaken to date include:
- Contribution to the review of the findings of the OPTIMA Pilot and Feasibility Study and planning for the RCT
- Review of recruitment materials for parents, such as Participant Information Sheets
- Participating in ‘think aloud’ sessions on the NHS MyHealthE portal
- Review of OPTIMA promotional material – including the website and animations
- Giving detailed feedback on the STEPS app to ensure it is fit-for-purpose and user-friendly
- Testing the Etch-a-Sketch Online task with their children
We would like to thank all our PPIE panel members, their keen involvement has helped us to shape the STEPS app and the OPTIMA programme for the trial. The panel will potentially help us to improve the lives of many families on services waiting lists. We very much enjoy working with them all and look forward to continuing to work with them through the trial.