Case study: A collaborative approach to setting research priorities in mental health involving the public and healthcare professionals
Convening mental health research
Around one in 10 people in the UK have experienced depressive symptoms. Whilst different treatments for depression are available, as many as one third of individuals diagnosed with depression will find that their symptoms do not improve with standard available treatments.
The NIHR MH-TRC was established to connect experts in experimental medicine and early phase clinical trials in mental health across the UK. One of the areas of research focus of the MH-TRC is mood disorders, including difficult-to-treat depression, which fails to respond to treatment with at least one evidence-based intervention.
In May 2021, the MH-TRC formed a steering group to lead on a research prioritisation project for difficult-to-treat depression to identify the most important research questions that would tackle it.
There was consensus that we need to understand more about difficult-to-treat-depression and how to manage it in order to meet the clinical need. This project will provide valuable insights into the outstanding questions in this area, such as how best to combine different types of treatment for depression.
Dr. Michael Browning, Consultant Psychiatrist and Associate Professor at the University of Oxford and lead of the Mood Disorders workstream of the MH-TRC.
"And having a ready-formed network meant that we were able to effectively mobilise the national academic community to identify the research questions that should be prioritised as a focus for researchers and funders over the next few years" adds Browning.
An inclusive approach to prioritise research that addresses unmet needs
The team used an approach based on an adapted version of the Child Health and Nutrition Research Initiative (CHNRI) method, a widely used health research prioritisation method, which involves crowdsourcing opinions from large numbers of patients and healthcare professionals who have an equal voice throughout the process.
We tailored this method to give a more active role to people living with depression, as well as health care professionals. This is important in helping to ensure that our results are relevant to all the key stakeholders involved in health research, and their needs. Dr. Parisa Mansoori, the Collaboration Operations Manager for the MH-TRC.
Including the views of different stakeholders, particularly patients, was central to this approach in determining the questions to prioritise and four public contributors living with difficult-to-treat depression joined the steering group.
It was important that there was a group of four people with lived experience helping to steer this project; this gave room for diverging views and wasn't tokenistic. The bottom line of helping people like ourselves was always present, because we were present.
James Withey, public contributor.
The subject matter of depression is very important to me having lived with the condition for many years and experienced unsuccessful treatments. Being involved in a process to discover the priorities for research made me feel I could make a difference and learn along the way.
Jan Speechley, public contributor.
By embedding the voices of patients, carers, healthcare professionals and research funders, the adapted CHNRI method ensured that collaboration was at the heart of shaping future research.
"My views were on a par with psychiatrists and research experts. We had to compromise, listen and work together - above all it was respectful" continues Withey.
The team invited 90 of the UK’s leading researchers in this field to propose three to five research questions each via an online survey.
An interactive workshop held with a group of clinical academics, healthcare professionals and patients, led to distilling 127 submitted questions into a list of 99 clear and distinct research questions.
Researchers and health care professionals then scored the research questions against five criteria via a second online survey. The criteria used to rank the questions - Answerability, Effectiveness, Impact on Health, Deliverability and Equity - were the result of a consultation with several funders, charities and other stakeholders, to ensure the criteria met their assessment standards.
A final survey included patients, carers and members of the public. Their responses were used to assign weighting to the scoring criteria, which determined the final ranking of the research questions.
Looking forward: guiding researchers and funders to identify what research matters the most
The findings will be available in the coming months and will indicate which research questions are currently more pressing and the answers that are needed to improve care, support and treatment for people with difficult-to-treat depression.
The results will also show the benefits and risks of focusing on different areas of research, guiding funders and researchers to make the best use of the funding and resources available for mental health research over the next few years.
“This collaborative approach to prioritising research which brings the patient voice to the fore provides important information that can help inform our future funding processes in difficult-to-treat depression” says Dr. David Baghurst, Director Research Programmes at NIHR Central Commissioning Facility.
This project was managed by Natalya Chapman, NIHR Graduate Trainee. To know more about the project or the work of the MH-TRC please contact firstname.lastname@example.org.