Our systematic reviewer Stephanie, has written a series of three blogs to help explain how we try ensure our reviews ask the 'right' questions. In this second blog, Stephanie describes four of the James Lind Alliance Priority-Setting Partnerships in mental health our Group has been involved in. She also gives us insight from her direct involvement as part of the research team for the Digital Technology in Mental Health PSP.
James Lind Alliance Priority-Setting Partnerships in mental health
Since 2014, the Cochrane Common Mental Disorders (CCMD) group has participated in four separate James Lind Alliance Priority-Setting Partnerships (JLA PSPs). We have been represented on each steering group by our Coordinating Editor and have provided core support identify existing literature (if you’re interested in learning more about PSP methods, the JLA Guidebook is free for anyone to access). Before I joined CCMD, I had the privilege of being directly involved with MindTech's Digital Technology in Mental Health PSP, working as part of their research team to help analyse submitted questions and verify whether or not they had already been answered by existing evidence by checking the literature (my experience with systematic reviewing came in handy here). If a question hadn’t been answered, it was put forward for prioritisation in a survey and final workshop for people with lived experience, carers, and clinicians. It was undeniably really refreshing to see a genuine and true commitment to involving people outside of academia in the partnership, and we had many interesting and thoughtful conversations that were inclusive of everyone’s opinions.
On the day of the final prioritisation workshop, three JLA facilitators were responsible for making sure everyone present was physically heard by using a nominal group technique (which prevents the domination of a discussion by dominant people). They worked tirelessly and fairly to keep workshop participants engaged and focussed on the task at hand, collating and ranking questions at multiple points in the day.
It was a real nail-biter; seeing the sweat on peoples’ brows, questions fluctuating up and down the list, followed by an achieved moment of agreement at the end of the day. This agreement came in the form of a top-26 list.
I wasn’t allowed to participate in the final workshop (having been a member of the PSP research group, this would be a conflict of interest), but observing gave me a front-row seat of prioritisation in action. The process was inclusive of different peoples’ experience of mental health, and there was a fair division of male and female participants, which were balanced in small group sessions (even though women made 70% of survey responders). However, there was a surprising lack of racial diversity, reflecting what we knew of the initial survey respondents, with the majority 88% identifying as ‘white British or white other’. It is therefore difficult to justify complete representation in this exercise, particularly because it is well-established that ‘black or black British’ populations are over four times more likely to be subject to detention under the Mental Health Act 1983, more likely to be diagnosed with a mental health problem and experience poor outcome from treatment. More investment is certainly needed to make sure that more voices are included in these sorts of priority-setting exercises internationally.
The top-10 prioritised questions from each of the four PSPs are listed in Table 1; it is clear to see that, although the PSPs cover quite different diagnosis and population areas (depression; bipolar; mental health and digital technology; and mental health in children and young people), there are similar themes that emerge from some of the questions posed including prevention, causes and treatment. For example, each top-10 includes a question that reflects the well-known frustration of patients and practitioners when it comes to waiting times in mental health services or diagnosis. While the Bipolar PSP (Q7) simply asks ‘why’ there is such a delay in diagnosis and how this can be shortened, the Depression PSP (Q10) seeks answers relating to the actual impact of waiting times on people with depression. The Digital Technology in Mental Health PSP (Q6) poses a question that focuses on the impact that could be had on access to services and waiting times with the introduction of digital technology to treatment and care, while the Children and Young People PSP (Q5) enquires into effective interventions that could support young people who are already subject to CAMHS waiting lists to prevent further deterioration. These examples also show that the questions are broad in nature, and not all of them are ‘answerable’ using randomised controlled trials. Having access to and having invested in understanding research priorities more broadly does not necessarily mean that each question can be put into practice or even studied.
What it does mean is that we have been given the opportunity to make public and start to translate these questions into something ‘researchable’ and ultimately provide new knowledge for the most important stakeholders - whether they be health care providers or patients and their families – who are involved in decisions about mental health diagnosis, treatment and care.
The CCMD group are already making a start at addressing some of the questions that are answerable using systematic review methods (for the purposes of the PSPs, a question is considered an ‘unanswered’ if it has not been addressed by existing evidence, including clinical guidelines as well as qualitative and quantitative systematic reviews). For example, we have recently published a protocol for multimedia–delivered cognitive behavioural therapy (CBT) versus face-to-face CBT for depression in adults, directly addressing question number 7 on the Digital Technology and Mental Health PSP. We have also published evidence for digital tech (E-health) interventions in children and adolescents with depression and anxiety who have long-term physical conditions. This is only a start, but these important questions are publicly available for researchers and systematic reviewers to take forward with the objective of building the evidence base for those who have set the priorities.
In the next blog, I’ll discuss barriers to inclusion in relation to priority setting partnerships, and the challenges that are still present to achieving full, fair representation of people from all different backgrounds.
Stephanie Sampson, March 2019
Stephanie is a Research Fellow in the Centre for Reviews and Dissemination at the University of York. Steph works closely with Cochrane Common Mental Disorders as part of an Economic and Social Research Council (ESRC) funded knowledge exchange collaborative with Tees, Esk & Wear Valley (TEWV) and Northumberland, Tyne and Wear (NTW) NHS Trusts.
Previously, Stephanie has worked with the Cochrane Schizophrenia Group at the Institute of Mental Health, University of Nottingham. Before working with CCMD she worked as a research consultant for MindTech’s Digital Technology in Mental Health James Lind Alliance Priority Setting Partnership (PSP), assisting health and social care workers, carers and people with lived experience develop their top ten questions for research.
Mental health in children and young people (James Lind Alliance 2018a)
Digital technology for mental health (Hollis et al 2018; James Lind Alliance 2018b)
Bipolar (James Lind Alliance 2016a)
Depression (James Lind Alliance 2016b; MQ 2016)