Written by Dr Ruth Jack and Dr Rebecca Joseph, research fellows from the Centre for Academic Primary Care at the University of Nottingham, and Debbie Butler, public contributor. All three have been working together on projects exploring antidepressant use as part of the Mental Health and Technology theme of the National Institute of Health and Care Research Nottingham Biomedical Research Centre.
Our research uses large health databases where any identifying information has been removed before we access it. This means we can study very large numbers of people (often millions!) without having to collect the data ourselves, and are able look at trends over time and less common health conditions more easily. However, this involves lots of statistical analyses which can be complex. While other types of research can involve the public in designing materials that will be given to people involved in their study, it’s often hard to make sure members of the public can contribute to our kind of research.
We first met with seven members of the Young People’s Advisory Group (NeurOX YPAG) in December 2020 when we were starting our study looking at seasonal trends within a year for different mental health issues. We talked with them about this type of database research, some of the analyses we often do and how we display the results. It’s important that people realise the value and expertise they can bring to these studies, even if the methods are complicated. Understanding how this research is done is also useful to assessing other studies, for example those reported in the media.
We met online again with five members of the NeurOX YPAG in April 2022 now that we have our results. We introduced the study, and then the young people went into two breakout rooms on their own to discuss what they expected the pattern over the year to look like. We used Padlet (an online bulletin board) to provide some questions, which they could make notes on, and we could download at the end of the session. Study team members were available to explain anything that wasn’t clear or answer any questions they had. We were then able to show them our results and ask if this matched what they had expected. Together, the groups summarised their discussions with us, so we could understand their thoughts and double check anything we didn’t understand.
There was another breakout session where we asked about the reasons they thought might explain the patterns we found. This produced a really fascinating discussion where the groups raised lots of issues that hadn’t occurred to us, as well as focussing on aspects that we hadn’t considered as so important.
Before each session we produced a short document including background about our study, and details and extra reading about some of the issues that we thought might be useful. These will hopefully also be useful for people to refer to for other studies,
We hope to have a third session where we can discuss how best to inform people about our research and findings. Helping people understand how database studies work, and showing the useful information they can provide, as well as gaining insight into our results are incredibly important. We’d strongly encourage researchers from all backgrounds to consider involving the public as much as possible in their projects.