We’ve discussed before on this blog the possible benefits of public/patient involvement in research, and how it might be done, but in this guest post from Jemma Cleminson we get an insight into the challenges of doing it in real life.
With many of the big funders of research now expecting involvement of patients and the public (aka ‘PPI’) from the earliest stages of research, right through to dissemination of the results and beyond (and quite rightly too!), it is vital that we recognise and acknowledge this increasingly important area. Involving PPI from an early stage can help to ensure that your research is relevant, makes sense, and is useful for the people for which it is intended to benefit.
I recently involved PPI in my research as an Academic Clinical Fellow at York, by obtaining a small grant from the NIHR Research Design Service to fund a study advisory group. I advertised (via social media, posters in departments, and through the help of the nursing team) and locally recruited six mothers of ex-preterm infants that had all spent time in SCBU [special care baby unit – UK]. We ran two focus groups with the aim of involving parents in the development of early ideas, research questions, methods, and patient-important outcomes around future projects.
These sessions generated rich discussions and a wealth of information and ideas for use in our future research.
The experience was well worth the challenges that it presented. After being successful in the competitive application for funding, I naively thought the process would be relatively straight forward. However, the recruitment of a diverse range of participants, the logistics of planning the meetings, and ensuring adequate financial compensation (in accordance with the NIHR INVOLVE guidelines), were unexpectedly trickier than expected. Considering that these were parents of young children, and they likely had older children also, I needed to ensure that the meetings were timed during school hours, or that I could assure alternative suitable childcare arrangements. Some mothers brought their children with them to the meetings, so I brought along age-appropriate toys to keep them entertained. I also needed to consider catering, dietary requirements, access issues at the location of the meetings, travel reimbursement costs, etc.
It was a bit of a bumpy road, requiring careful and thorough planning, but was well worth it. As a consequence of this project, we are now reviewing the direction of our research, the outcomes that we will measure, and the way in which we will conduct research to make it more ‘parent friendly’ in (what can be very scary) SCBUs. The participants were keen to remain involved in future projects, so we are maintaining contact through a private social media platform, while we plan the next stage.
My advice for anyone embarking on the initial stages of involving patients and the public in their research is to:
• Read, re-read, and refer back to the NIHR INVOLVE guidelines (their advice is indispensable)
• Plan ahead carefully for all eventualities eg. What will I do if somebody drops out at the last minute?
• Allow for leeway in your budget in case you overspend
• Seek feedback from the participants and maintain contact (they could be your future steering group!)