Why do a significant but small number of people who inject drugs in Bristol develop MRSA sepsis and what can we do to reduce this?
This was the question asked by Simon Packer and colleagues at the NIHR HPRU in Behavioural Science and Evaluation in a study published in the journal Eurosurveillance. Here is how we involved service users in the design and development of the study.
Developing patient and public involvement (PPI) with seldom-heard groups can be challenging. It requires a commitment from the research team that exceeds standard expectation and a truly collaborative approach to finding people to take part and in running the meetings.
Working with researchers from the University of Bristol, Public Health England and service providers from Bristol Drugs Project, we developed a public involvement project to help inform the different stages of the study.
How did we do this?
Working closely with service providers, we recruited service users to the first stage of our public involvement work. We organised a meeting to discuss acceptability of the study and the design of the questionnaire. We talked about the way some of the questions could be misread, could sound threatening, invasive or irrelevant to the people answering them. We made notes based on these discussions and then made changes to the study materials to reflect the ideas of the participants.
The four service users who contributed provided us with a great deal of detail with which to redraft the questionnaire. As a result we changed the formatting of the questions and included new data fields.
Working with the service users had a significant impact on both the study design and interpretation of the results. The questionnaire was central to the data-gathering stage of the study and it was crucial that its design was as usable as possible. Our experience of involving this seldom heard group is a good example of how collaborative working and seemingly low-level involvement can have a significant impact and highlight problematic areas that we would not have identified otherwise.
Learning and dissemination
We have shared our experience of involving people who inject drugs in this study at conferences nationally and internationally. Researchers and others with an interest in public involvement have been keen to discuss the challenges and barriers we encountered. It is our collaborative approach to PPI, which has been of most interest and which has been our most significant point of learning. We are building on the lessons learnt to develop strategies to achieve greater diversity in future public involvement work.