Priority-Setting Partnerships in mental health

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.


Table 1

Priority topic

Top-10s

Mental health in children and young people (James Lind Alliance 2018a)
  1. Would the screening of young people be appropriate for the early identification of mental health difficulties, and if so, what would be the best way of carrying this out?
  2. How can young people be more involved in making decisions about their mental health treatment?
  3. How can Child and Adolescent Mental Health Services (CAMHS), education providers and health and social care departments work together in a more effective manner in order to improve the mental health outcomes of children and young people?
  4. What are the most effective early interventions or early intervention strategies for supporting children and young people to improve mental resilience?
  5. What interventions are effective in supporting young people on Child and Adolescent Mental Health Services (CAMHS) waiting lists, to prevent further deterioration of their mental health?
  6. What methods can parents use to identify that a child or young person's mental health is deteriorating?
  7. Which interventions are effective at supporting suicidal young people?
  8. How do family relationships, parental attitudes to mental health, and parenting style affect the treatment outcomes of children and young people with mental health problems (both positively and negatively)?
  9. What are the most effective self-help and self-management resources, approaches or techniques available for children and young people with mental health issues?
  10. What is the most effective way of training teachers and other staff in schools and colleges to detect early signs of mental health difficulties in children and young people?
Digital technology for mental health (Hollis et al 2018; James Lind Alliance 2018b)
  1. What are the benefits and risks of delivering mental health care through technology instead of face-to-face and what impact does the removal of face-to-face human interaction have?
  2. How do certain mental health conditions (e.g. depression) affect how people engage with technology?
  3. How can treatment outcomes be maximised by combining existing treatment options (medication, psychological therapies etc.) with digital mental health interventions?
  4. At what point in the care pathway (e.g. crisis intervention, prevention, engagement, treatment, maintenance, and recovery) are digital interventions most safe and effective?
  5. How should apps for mental health be evaluated and endorsed?
  6. What impacts will the adoption of digital technology in mental health services have on capacity, access to services, waiting times and preferred appointment times?
  7. Are therapies (e.g. CBT) delivered via digital technology as effective as those delivered face-to-face?
  8. Can the common elements of therapy (e.g. empathy, gestures, non-verbal cues) that come from person-to-person interactions be maintained with digital technology interventions?
  9. Do digital health interventions increase reach and access to groups and people less well served by traditional mental health services (e.g. Black and ethnic minorities, men with depression, people in rural areas etc.)?
  10. How can social media be used more effectively to bring people with mental health problems together and help them connect e.g. in their communities, rather than isolating them in their homes?
Bipolar (James Lind Alliance 2016a)
  1. What causes bipolar?
  2. How can treatments be tailored to individuals?
  3. What is the most effective combination of self-management approaches, therapy and medication?
  4. What are the best ways to manage suicide risk among people with bipolar?
  5. What could be done for people who do not get better with treatment?
  6. What are the best ways to manage the side-effects of medication (including weight gain, problems with thinking and memory, and emotional numbness)?
  7. Why does it take so long to get a diagnosis of bipolar disorder, and how could time to diagnosis be shortened?
  8. Which are the best medications for treating episodes and for prevention of relapse in bipolar?
  9. How effective are talking therapies such as counselling, dynamic psychotherapy and CBT?
  10. Can medications with fewer side-effects be developed?
Depression (James Lind Alliance 2016b; MQ 2016)
  1. What are the most effective ways to prevent occurrence and recurrence of depression?
  2. What are the best early interventions (treatments and therapies) for depression?
  3. And how early should they be used in order to result in the best patient outcomes?
  4. What are the best ways to train healthcare professionals to recognise and understand depression?
  5. What is the impact on a child of having a parent with depression and can a parent prevent their child from also developing depression?
  6. What are the best ways to inform people with depression about treatment options and their effectiveness in order to empower them and help them self-manage?
  7. What are the barriers and enablers for people accessing care/treatment when they are depressed, including when feeling suicidal, and how can these be addressed?
  8. Does depression impact employment? How can discrimination and stigma of depression in the workplace be overcome, and how can employers and colleagues be informed about depression?
  9. What are the best ways to help friends and family members to support people with depression?
  10. Are educational programmes on depression effective in schools for reducing stigma?

References

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