“The most common way people give up their power is by thinking they don’t have any.”
This quote by the social activist Alice Walker relates to this paper by Laoise Renwick et al (2022) in that the views of mental health service users can be underrepresented despite holding great knowledge about what might improve mental health care.
Engaging in group discussions and voting with stakeholders is an established process for prioritise research needs, developed by the James Lind Alliance (JLA) over recent years. JLA research prioritisation work tends to be done around a theme (e.g. depression or youth mental health) to produce a top ten list of research questions that can ideally be put forward for funding (James Lind Alliance, 2021). A growing trend exists with involving people with living experiences of mental health difficulties to identify research that is authentic to their needs, and it’s vital that these prioritisation projects pay close attention to this.
To address this, the paper (Renwick et al, 2022) identifies research priorities around Early Intervention in Psychosis (EIP) employing views of users of research beginning to experience psychosis, alongside carers and healthcare professionals. The aim was not only to capture the stakeholder’s voices, but also draw on scientific literature to ensure the identified research gaps were current.
A steering group shaped questions for a survey involving service users to clinical representatives alongside those with technical knowledge of information gathering and priority setting. The steering group conducted a mapping exercise drawing on national guidelines and policies to build key themes to inform the survey questions.
In the next stage, the survey was conducted via two phases. The first phase gathered research uncertainties in the form of themes involving “community engagement, recovery, treatment refractoriness, effective interventions, EIP and physical health improvement” (Renwick L et al, 2022:3). In the second phase, research uncertainties were refined into questions and resent out for selection from a wider network of service user and carer groups. Discussion between the two lead authors resulted in the selection of questions for the next stage of prioritisation. Lastly, questions were fielded against research from literature reviews, and excluded if a strong evidence base was found. The remaining questions were ranked into a shortlist, and then a final list was produced using a Nominal Group Technique (NGT) – structured small-group discussions involving deliberating and voting.
The first phase of the survey gathered 80 responses, while the second 137. In total 283 questions were generated, then refined to 258. Over 1,000 literature searches located literature reviews relevant to 18.4% of the questions, 237 questions remained following validation from steering group members, 42 questions were then rendered into a top ten list.
Top 10 research questions for early intervention in psychosis
The following ten research priorities were highlighted from the steering group through the decision-making process:
- What are the information needs of people with first‐episode psychosis and can this help access treatment?
- How can families be enabled to recognise the early signs of psychosis or attenuated symptoms and seek help early?
- What interventions are effective in reducing adverse childhood experiences linked with later onset of psychosis?
- What are service user preferences for psychological treatments during a first episode of psychosis?
- What are service user priorities for treatment following a first‐episode psychosis?
- Can effective school‐based preventive programmes be implemented to detect emerging psychosis?
- What has been the impact of new waiting time standards on service user care, staff efficiency, morale, and overall service delivery?
- What interventions promote participation in everyday life following a first episode of psychosis?
- In what ways can healthcare professionals promote self‐management following first‐episode psychosis?
- What influences recovery following first‐episode psychosis?
Renwick and colleagues concluded:
The top 10 emphasised an absence of evidence for interventions to enhance community participation and increase users’ ability to self‐manage.
Therefore, addressing these gaps may inform the future development of EIP (early intervention in psychosis) research and care provision to people with first-episode psychosis and their families.
Strengths and limitations
A systematic staged approach was utilised as recommended by the James Lind Alliance (2021); an organisation providing guidance to prioritise research. Also, looking at existing research enabled the validation of research gaps. However, when comparing to existing systematic reviews, it was unclear if different stakeholder perspectives were analysed at this stage. Without understanding the meanings that stakeholders ascribe to the research gaps suggests some voices were not equally heard early on, for their views might appear to have an evidence base within the literature reviews.
Another critique is that while the paper focuses on carer and server user involvement, the recruitment of such stakeholders was in the minority compared to professionals with the final selection of research questions. Though it is possible such participation might be limited by the monetary costs with training people not familiar with priority setting, alongside psychosis impacting on abilities to participate (Boivin A et al, 2014). Finally, a top ten list in order of priority was not produced which can help to define the most significant question for a research project.
Implications for practice
What drew my attention to this paper was service user involvement with priority setting research in which their experiences of a mental health service, can help to inform research to improve care. For me it brings about questions in who has expertise and its power with supressing certain populations with sharing their views. This is important for people experiencing psychosis for they might find it difficult to figure out their own personal reality. However, these experiences can be underplayed if seen purely through a medical lens in that the reality of the individual is disavowed limiting opportunities to collaboratively seek ways to lessen mental distress. Whilst the paper draws on participation of service users and carers, it symbolises something greater than identifying research gaps relating to EIP. It symbolises to me a need to really improve participation in mental health care and research to ensure it is not tokenistic.
Statement of interests
Kris Deering has worked with the lead author (Laoise Renwick) on another systematic review concerning the priority setting of mental health research, but not the paper reviewed in this blog.
Stakeholder identified research priorities for early intervention in psychosis. Health Expect. 2022; 1– 11. doi:10.1111/hex.13604, , , , , .
Boivin A, Lehoux P, Lacombe R. et al (2014) Involving service users in setting priorities for healthcare improvement: a cluster randomized trial (PDF). Implementation Science 2014 9(24) 1-10. https://pubmed.ncbi.nlm.nih.gov/24555508/
Carry, J. (2022) Quote Fancy, last accessed 04 October 2022. https://quotefancy.com/jim-carrey-quotes
James Lind Alliance. (2021). The James Lind Alliance Guidebook version 10 [updated March 2021]. https://www.jla.nihr.ac.uk/jla-guidebook/downloads/JLA-Guidebook-Version-10-March-2021.pdf
Rand L, Dunn M, Slade I. (2019) Understanding and using patient experiences as evidence in healthcare priority setting. Cost Effectiveness and Resource Allocation 2019 17(20), 1-13. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4909789/