Depression: Asking the Right Questions

JLA PSP final report (2016) full text summary PDF

For which topic were research priorities identified?

depression

In which location was the research priority setting conducted?

Europe - United Kingdom

Why was it conducted at all?

Depression affects around 350 million people worldwide and roughly 1 in 10 people in the UK. It is the leading cause of disability, greatly impacting people's daily lives, and can lead to suicide. Yet despite this, it is still seriously under-researched and prospects for research are under-funded.

What was the objective?

to ensure that patient, carer and healthcare professionals voices are represented in setting research priorities for depression

What was the outcome?

a ranking list of 10 research questions

How long did the research prioritization take?

May 2014 - October 2015

Which methods were used to identify research priorities?

JLA method

How were the priorities for research identified exactly?

Step 1: setting up PSP: key stakeholder organizations, academics, and service user representatives identified and invited to be partners, steering group formed. Step 2: collecting research uncertainties: via survey: What are your questions about depression? Your question(s) can be about anything that you think is important to do with depression. We are interested in every aspect of depression - from diagnosis, to care, treatment and recovery. Questions about cause and prevention are welcome too., approximately 10000 individual questions submitted. Step 3: data processing: questions grouped, out-of-scope removed, check against evidence, resulting in longlist of uncertainties. Step 4: interim ranking: survey asking participants to rate the importance of each question, the ratings for each of the three stakeholder groups were looked at separately, top ranking questions for each group then shortlisted, resulting in list of 27 questions. Step 5: final prioritization: workshop: small group and large group discussions with nominal group technique and ranking

Which stakeholders took part?

Those with experience of depression, family and friends, health and social care professionals and volunteers. Survey: over 3000 participants: approximately 80% identified as having experience of depression. Workshop: 16 participants.

How were stakeholders recruited?

Participants were recruited via key stakeholder organizations, academics, and service user representatives.

Were stakeholders actively involved or did they just participate?

Stakeholders not only participated but were also actively involved in the research prioritization process: They were part of a steering group. The steering group consisted of 19 members. The members ensured that the project met its objectives.