Illustration 3 Incorporating feedback from PPI within community settings to intervention development

Aims

 This example will focus on how PPI feedback from community settings was incorporated with insights from the PBA and PPI contributors on the research team during intervention development. The programme of research is funded by the Stroke Association and British Heart Foundation, and seeks to develop a digital intervention for patients and GPs to reduce raised blood pressure after a stroke or Transient Ischaemic Attack (TIA).

Methods/What we did

 PPI contributors on the research team raised the importance of consulting with a diverse range of stroke patients (e.g. in terms of fatigue, and cognitive or mobility problems) when designing the intervention to promote feasibility and acceptability. Our PPI contributors helped put us in touch with community support groups, and the Different Strokes Southampton group and Oxford Aphasia Group kindly invited us. We visited each group three times during the early stages of intervention planning and development - speaking to more than 30 PPI contributors in community settings. Unlike our qualitative research using the PBA, these sessions were not recorded and did not seek to achieve detailed feedback on every aspect of the intervention. Instead, a flexible set of questions were prepared to facilitate an informal discussion about the intervention and target behaviours, at times supported by extracts from the intervention or recruitment materials which we were particularly interested in exploring with our target population.

Results/What we discovered

 PPI contribution from these community groups was extremely valuable to help inform decisions about the intervention design and procedures. For example, while evidence had suggested that daily reminders to monitor blood pressure could be irritating, discussions with stroke patients and their carers suggested that daily reminders would be important, and some wanted the option for twice daily reminders. This suggested the need for a flexible reminder system.

Implications

 Engaging with PPI in community settings provided additional insights to complement working with PPI within the research team, and using the PBA. We gained rapid feedback at an early point of intervention development from a diverse group of people, informing key decisions about the draft intervention. Discussing the specific nature of this intervention with a wide range of people with diverse experiences of stroke highlighted novel concerns which had not emerged from the evidence, or from our research planning meetings.

 Community group settings appeared most useful for generating ideas and raising concerns, rather than refining the intervention content. For this, the feedback from community groups was discussed with the intervention development team, and our PPI contributors within the team were essential in deciding how best to implement changes to the intervention to accommodate these novel perspectives. Qualitative research conducted in line with the PBA then enabled more in-depth exploration of perceptions of the intervention content, informing further optimisation of the intervention.