What are the top research priorities for those affected by depression? We worked with the James Lind Alliance to find out.
Depression is one of the most common mental health conditions, affecting 1 in 10 people each year in the UK. Yet little is known about the condition or how best to treat or prevent it.
The 'Depression: Asking the Right Questions' project is a James Lind Alliance Priority Setting Partnership that set out to identify what ‘unanswered questions’ people affected by the condition had.
More than 3,000 people were surveyed, with the answers analysed and shortlisted by a mix of patients, carers, medical professionals and academics. This determined the top ten priorities for research.
The top ten priorities
The results are providing researchers with new perspectives to improving treatments and care, our helping to guide our own funding decisions, and have illuminated academic understanding of patient priorities.
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Stage 1: Establishing the partnership
Key stakeholder organisations, academics, and service user representatives were identified and invited to be partners in the project, and a steering group was formed in order to ensure that the project met its objectives
Stage 2: The initial survey
We gathered questions from people with personal experience of depression, friends and family members, and health care professionals via a public survey. The survey was available online between May and July 2014 and asked for respondents to share their questions for research to answer.
Stage 3: Data assessment
A team at the University of Swansea led the analysis of the initial survey data. Their objective was to review each response, categorise it and identify each unique question. Where there were duplicates, these were combined into one representative question. They also searched systematic reviews of existing evidence in order to check which questions had already been adequately answered by research. Questions that were deemed already answered, were categorised as “certainties” and removed.
Stage 4: Interim prioritisation
- Shortlisting surveys
Two surveys, one for the Treating Depression theme and one for the Understanding Depression theme, were used to shortlist the questions, or “evidence uncertainties”. These were made available online and each ran consecutively for one month. Each survey received over 1,700 responses. From this a shortlist of 27 questions was identified.
The 27 shortlisted questions were then taken to a workshop on World Mental Health Day, 10th October 2015. The workshop was attended by 16 people who had participated in the initial and shortlisting surveys, and was observed by MQ staff and research funder representatives.
Following the standard JLA priority setting approach, which uses Nominal Group Technique, there were multiple sessions during the day in which participants worked in small groups in order to discuss and rank and re-rank the questions. These were facilitated by independent JLA advisors. The day finished with the whole group of participants reaching a consensus agreement for the full ranking of the questions, with a primary focus on the Top 10.
- Action on Depression
- Arthritis Research UK
- British Association for Counselling and Psychotherapy
- British Heart Foundation
- British Neuroscience Assocation
- Carers Trust
- Centre for Affected Disorders, King's College London
- Centre for Mental Health
- Cochrane Collaboration Depression, Anxeity and Neurosis Group
- The Charlie Waller Memorial Trust
- Depression Alliance
- Epilepsy Research UK
- Get Connected
- The Matthew Elvidge Trust
- Marie Curie
- NIHR Clinical Research Network - Mental health
- The McPin Foundation
- The Mental Elf
- Mental Health Research UK
- MND Association
- MS Society
- Nottinghamshire Healthcare NHS Trust
- Research Autism
- Rethink Mental Illness
- Royal College of General Practitioners
- Royal College of Nursing
- Royal College of Psychiatrists
- Sense About Science
- Scottish Mental Health Research Network
- Service User Research Enterprise, Kings College London
- Stroke Association
- Young Minds
The James Lind Alliance
The James Lind Alliance is a non-profit making initiative, which is funded by the National Institute for Health Research. Its aim is to bring patients, carers and health care professionals together to identify and prioritise research questions for researchers and funders to address. It oversees all partnerships, like this one, which prioritise research questions.
The Steering Group
The Depression: ARQ is managed by a Steering Group and is chaired by an independent advisor from the James Lind Alliance. The Steering Group includes individual patient/carer representatives as well as representatives from advocacy groups, research funders and clinicians.
The role of the Steering group is to develop and implement a Project Protocol that sets out the plans for the Depression: ARQ project. The Steering Group is responsible for establishing a timeline and budget for the project and is committed to producing a prioritized list of unanswered questions about depression.
Patient and Carer Representatives
- Tania Gergel, Mental Health Research Network
- Thomas Kabir, The McPin Foundation
- Megan Rees, Mental Health Research Network
- Paul Lanham, Patient Representative
- Judy Lanham, Carer Representative
- Professor Keith Lloyd, University of Swansea
- Dr. David Kessler, University of Bristol
- Professor Glenys Parry, University of Sheffield
- Professor Dame Til Wykes, Kings College, London
Representatives from Co-funding partners
- Jennifer Tuft, MQ Transforming Mental Health
- Iris Elliot, Mental Health Foundation
- Cynthia Joyce, MQ Transforming Mental Health
The Partnership and the priority setting process is supported and guided by:
- Katherine Cowan, the James Lind Alliance