Patient and Public Involvement (PPI) is an essential activity when designing a research study. Gaining insight from patients and the public on particular aspects of study design ensures the appropriate question is being asked, and that the appropriate methods are being employed to answer the question.
In a grant application to investigate the effectiveness and cost-effectiveness of a cycling and education programme in the treatment of hip osteoarthritis, PPI activity was conducted to inform the research design.
The PPI process
The Research Design Service South West PPI Lead set up a service advisor consultation group using contacts supplied by the research team. The PPI Lead and one of the research team arranged the group at a local leisure centre, obtained feedback on specific research team queries, collated responses and then fed back to the research team. Overall, the group were very positive and were supportive of the research question. There was also on-going contact with service user advisors to address further queries as the grant application developed.
How the application changed as a result of PPI input
When the research design options were explained, the group raised concerns about the willingness of potential participants to be randomised in a standard randomised controlled design i.e. potentially not to receive the cycling intervention. The importance of the randomised controlled design to determine best practice will therefore be highlighted in the Patient Information Sheet and potential contamination data collected.
The importance of disseminating research results via GPs was noted and the group also had suggestions in terms of disseminating information via health centres, health reporters, and via the radio. These have all been included in the dissemination plan.
On the basis of the PPI group suggestions, the intervention has been extended from six weeks to eight weeks. The last two sessions consolidate cycling technique and build participant confidence further to join regular spinning classes after the programme. They highlighted the importance of providing supplementary information (i.e. on stretching exercises) between sessions, which has also been incorporated.
The view from the Researcher
“PPI has helped us to improve the content and delivery of the components of the experimental intervention, provided insight into acceptable research methodologies for patients, and steered us towards our primary outcome measure. It has without doubt strengthened our research application.”
The view from the PPI Adviser
“This was a good example of enthusiastic PPI advisors who had undertaken the cycling intervention and were keen to share their experiences. Their input was useful not only to streamline the cycling intervention and to improve it for those who will ultimately participate in the research, but also to inform the design of the proposed research and the primary outcome measures to be used.”
The view from the Patient
“This is an excellent and very worthwhile programme, improved by the experience of taking part in the feedback session to further enhance future courses. Such research is vital and makes for a better programme and better prospects for those involved as patients. This course should be rolled out to service users, and to as many GPs as possible. Please inform widely about all aspects including the research proposals.”