In this guest post, Dr Jo Cairns discusses the importance and challenges of public involvement in alcohol research following the recent Alcohol Research UK report. Jo is a Lecturer in Health Promotion and Public Health at Canterbury Christ Church University and previously worked as a Senior Research & Policy Officer at Alcohol Research UK.
Only a limited amount of alcohol research taking place formally involves people experiencing alcohol-related harms as potentially highly valuable contributors to research processes and outputs. Of the research that does, there are often many challenges involved and the ‘black hole of public involvement’ includes cases of public involvement in which the research remains unchanged.
Following a year-long programme of public involvement at Alcohol Research UK we put together a report which aims to highlight the importance of the issue and next steps for the field in taking this agenda forward. The report seeks to provide guidance to researchers working in this field and offers the following ten good practice recommendations based on the conversations we had with stakeholders:
- Make it fit (there is no one size fits all so make it fit the group(s) of people you are seeking to involve)
- Invest in building relationships (trusting relationships take time to evolve – it is important to spend time with those you are hoping to involve in research)
- Mind your language (no-one outside the academia likes academic jargon – even some within don’t! Your language should be accessible to all)
- Manage expectations (whilst it is safe to assume we would like to change the world with research it isn’t necessarily going to, so be upfront with people and realistic while remaining ambitious)
- Provide remuneration and reimburse expenses
- Provide training and support (and undergo training yourself if you think it would help)
- Be imaginative and make it fun
- Think about power (whoever is responsible for the research grant is always going to be in a position of power but where possible try to ensure there is a level playing field and everyone’s points of views are valued and respected)
- Avoid tokenism
- Aim for sustainability (research stops when funding stops but relationships don’t end then so try to continue to work with participants and aim for sustainable change)
Additionally, I would add that having a diverse group of people is fruitful. Recruitment of people who do not access treatment and services remains a challenge but doesn’t mean we shouldn’t try to have a range of people with and without experience of services. People who do not access services may not have done so for a range of important reason and their voices may go unheard if we are unable to involve them in research. Snowballing may help with this goal as their peers may be interested in getting involved through word of mouth.
We acknowledge that there are many other challenges to public involvement in alcohol research in addition to recruitment. On the one hand, public involvement in research can make research more relevant, impactful, empowering, and can help with recruiting research participants. On the other hand, it can bring to light the power imbalances involved in the research process, tokenism, and even suspicion as one expert by experience put it:
“Service user involvement in research in the alcohol field is all too frequently still met with suspicion and/or tokenism by academics.”
But if done well, public involvement in alcohol research can help those who have experienced alcohol problems, as one member of the Sheffield Addiction Recovery Research Panel (ShARPP) describes in the report, and potentially help with key issues such as overcoming stigma. Participants often feel valued and respected as a result of being involved in research. However, this is not always the case and there has been a frustration that public involvement can be merely a tick-box exercise to satisfy funder requirements. To some extent this is understandable given competing demands on researchers, but it is not excusable; if funders are going to make it a requirement then they also need to factor in the costs and time attached to genuine public involvement.
Alcohol Research UK has taken the above on board and for the first time is piloting an Expert by Experience (EbE) Panel which comprises six members who collectively bring together different types of knowledge and experience to the table. Panel members come from all walks of life – some have personal experience of alcohol harm whilst others have been affected indirectly, cared for or worked with those who have personal experience. This panel will be part of the shortlisting of Research Innovation grants 2018. For more information see here (deadline 16 January 2018).
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