Relaxed teatime get-togethers are enhancing the accuracy and impact addiction research by deepening collaboration between researchers and people with first-hand experience of the subjects they study.
“Research can sometimes be self-serving,” says Jo Neale of the National Addiction Centre at King’s College London, who spoke at the annual conference of Alcohol Research UK, which funds research. “Researchers will tend to think they are onto the best project ever. It is good to check a study is relevant to anyone beyond yourself.”
Addiction researchers, as self-absorbed as they might be on occasion, have always needed to work with people who have first-hand experience the phenomena they wish to investigate. Some researchers may have direct experience themselves, but they still need to refine their approach to ensure the best results. This part of the research process has often been haphazard.
For more reliable results Neale founded a permanent panel, the Addiction Service User Group (SURG), in partnership with the Aurora Project, a provider of peer-support for substance users in Lambeth, a south London borough. The group’s monthly meetings are “informal and relaxed”, says Neale, with no formal minutes taken of the discussions between its 13 members and visiting researchers.
A modest £2,000 ($2,600) a year grant from the NIHR Biomedical Research Centre for Mental Health at King’s College largely underwrite the cost of essentials to its work, like tea and cake. The convivial meetings are supported by swift and friendly email communication between the group members.
It has shown its ability to help researchers avoid some unexpected pitfalls in its three-and-a-half years. One study, for instance, involved a medication dispenser. Its elongated shape, researchers thought, made it ideal for being carried around in a handbag. But, thanks to the group, it was realised its slender form may also be the source of unfortunate misunderstandings when stowed in a gentleman’s trouser pocket.
The group has also repeatedly cracked the perennial problem of attracting people to take part in studies. It also fine-tunes the language used in questionnaires, a common way to gain insight into addiction and recovery. Substance issues, with their tendency to provoke undue finger-wagging and shame, are unusually perilous linguistic terrain. The group ensures study participants are not confused or alienating by the material they receive, problems which can skew the results. A study’s ethics can also be given another once-over.
The non-research side also benefits: “What I gained from it was a strengthening of my own recovery,” says one regular. “Involvement has given me more insight.” This included a better understanding of the sleep disturbances commonly found in people who have been alcohol dependent. “Although I understood it from my own experience, I didn’t understand what is behind it,” she says. It is also a boost to have something to offer society, she says. Others echo the sentiment.
“Most members would agree that being part of the group has allowed us to refine our thinking and develop our own strategies for coping with our addictions and the treatment we receive and to think more strategically about how we might influence change in broader addiction treatment,” says Paul Lennon of Aurora. “It has allowed us to understand ourselves and where we fit into the world, giving us a deeper understanding of our addictions.”
Deepening collaboration between addiction researchers and the custodians of the phenomena they study can improve research results. Among the examples of the success is the Substance Use Recovery Evaluator (SURE), a benchmark of progress in becoming free of a dependency on alcohol or other substances.
With collaboration now often pivotal in securing funding for research it is is an attractive resource for addiction researchers, collaborators and students. The number of study protocols and projects passing through the group has grown rapidly, with 15-20 research teams consulting the group each year. So, based on its success, other research groups are following suit.
“Traditionally research based on a dip-in, dip-out model, which is exploitative and does not develop sustainable relationships,” says Andy Irving of Sheffield University which last year set up its own panel, the Sheffield Addiction Recovery Research Panel (ShARRP). This, he says, can play a part in Sheffield’s bid to become the UK’s “recovery capital”.
The King’s College panel’s membership changes from time to time, but the benefits of participating remain stable. “I care about the research group, because it works,” says one member. “It is not tokenistic. It is genuinely collaborative.”
New, sustainable forms of research collaboration, thanks in part to the judicious application of tea and cake, offer hope of refinements to addiction research which will benefit us all.
Note: The book Alcohol Companion is also not intended to be therapeutic, but aims to provide the general reader with an accessible overview of the results of scientific research on alcohol. ■