A post by guest bloggers Dr Morris Gallagher and Dr David Julien
Is service user involvement in substance misuse research largely tokenistic?
Often service users have a nominal consultative role in researching local issues and developing local policy. Sometimes they are employed as peer researchers, but rarely do they work as partners or leaders in all aspects of the research.
Increasingly service users are active in service planning and provision. They want to ask their own questions about what is needed and what works. This will impact on patients’ and professionals’ power about who has “the knowledge” about what works to promote recovery.
With the support of our Drug Action Team we decided to train drug and alcohol users who were stable in recovery to answer the question “Why do drug users who have never been in treatment not access treatment?” Five service users participated in the Peer Based Research (PBR) training. A PBR is “someone who has a lived experience of the area being researched and is trained to do research in their community.”
The aim of the training programme was to equip PBRs to do research. It covered all the stages of planning a research project: What is research; sampling and bias; interviewing skills; analysis and sharing findings; and planning the research project. Session 1, for example, covered the “shape” of a research project, jargon busting about research language, what is a PBR and how to be a “safe researcher.”
The training was delivered over six three-hour sessions. Methods were tailored to people who were not used to being in a learning environment; it was a mixture of learning facts and new skills in small group work with lots of breaks. For more detail see the full article.
There were many positive experiences which included watching participants grow and become a team – PBRs and trainers together. But there were problematic areas for the professionals such as managing status advantage, and letting go of knowledge and cultural differences.
All five PBRs were involved in producing ideas about how to reach our sample (drug users never in treatment). A trainer was available to support them before and after the interviews. Initially all PBRs lacked confidence in their newly acquired skills but this changed as they did more.
The analysis was performed by two PBRs using principles learnt during their training. Summary conclusions and recommendations were also made by the PBRs and shared verbally with commissioners.
Was it worth it? Yes. The PBRs are now planning and conducting their own research using the skills that they have acquired. One of the PBRs is now employed as a Recovery Champion in South Tyneside. We are also in the middle of a PBR training project with kinship carers of drug and alcohol users.
PBR is one tool to help tip the balance of power in research towards the service user.
Dr Morris Gallagher and Dr David Julien, GPwSI in substance misuse management, South Tyneside and Mr Mark Joyce, Training and development manager, First Contact Clinical, South Shields