We started our 2016 ECRAG meetings by setting the bar high! It was great to welcome, not one, but three guest speakers from Warwick University: Dr Carole Mockford and two ‘lay people’ Susan Boex and Uma Sharma.
Patient Public Involvement (PPI) is now becoming an integral part of research and is essential to secure funding. Patients can be involved in research right from formulating the question to disseminating results. Although there are still some sceptics about, in my experience most researchers agree with the principles of PPI. However, there are challenges when it comes to PPI; how can it be done well and not just as a tick box exercise? Fortunately we can learn from the experts and Carole, Sue and Uma delivered an inspiring and informative discussion about their experience of being involved in a research project which was driven by ‘lay people’. Here are their top tips and words of wisdom…
The study was called SHARED (Services after Hospital: Action to develop REcommenDations) and included patients at the following stages:
- Project advisory group
- Co-researchers who: conducted interviews, facilitated focus groups and analysed transcripts
- Dissemination message and user-led recommendations
- Costs: PPI is expensive! Don’t underestimate costs. This wasn’t a problem for the funders though- the funders actually agreed to fund the application if more money was given for PPI. Example costs:
- £20 per hour, per person for time (8 hour day = £160)
- £500 per day for interview training (3 days= £1,500)
- Other training: ethics, research methods, data analysis, focus groups
- Room hire, food, travel costs
- Conference fees, accommodation, travel
- Costs for carers
- Ethics and R&D: the ethics committee were very supportive, HOWEVER, R&D not so much, some R&D sites insisted on lay people having research passports which delayed the interviews and different sites had different requests.
- Keeping in touch: Ongoing communication between the research team and lay people was found to be really important. This could be though face-to-face meetings, over the phone or by email.
- Interviews: Semi-structured interviews were conducted by lay researchers and the participants responded well to this. Researchers were also present and available for support and advice, which was tailored individually to each interviewer.
- Analysis: Transcripts were given to each lay person. A framework analysis was developed through brainstorming on a flipchart. Key statements were developed through a combination of meetings and email communication with researchers and lay people. The participants were then invited back to review the findings which led to 12 key statements being developed. These 12 statements were presented to a focus group that advised on wording and ordered by importance. Recommendations were developed from these.
Lay peoples’ perspective
Why they got involved:
- They have direct experience of the condition (dementia) through friends and family and could emphasise with the participants.
- Some had previous research experience though volunteer work and were already passionate about research.
- They found the study interesting and felt it would highlight problems they had experienced themselves.
- They enjoyed having a challenge and learning new skills; talked about a desire to learn.
- They felt they could make a difference.
- It was interesting to meet other lay researchers.
- Some were recruited through the Alzheimer’s Society which they were already actively involved with.
Experience of the research:
- The research team were supportive and encouraging.
- Found it interesting to hear different views from patients and service providers.
- The discussions after each interview were good because they got feedback and could improve.
- They received good preparation for the analysis and good guidance on the process.
- Some people felt it was reassuring to see themes from the transcripts which corresponded with their experiences of being a career.
- They felt their contributions were valued.
- The experience encouraged them to become more involved in research and to highlight the importance their perspectives can bring.
Key messages: Involvement of lay people influenced the direction of the study and shaped the policy recommendations. Their training and experience has built capacity for other studies. Top tip is to over budget PPI- it is costly but funders are willing to pay!
For more information of the study check out their website: http://www2.warwick.ac.uk/fac/med/research/hscience/rcn/research/themeb/?newsItem=094d43f5505c9edb01507f0c05336c55