In 2021, the Swedish Agency for Health Technology Assessment and Assessment of Social Services (SBU) published an inventory, which identified over 2000 evidence gaps in mental health1 from the two known international database of evidence gaps: the SBU Evidence Gap database, which is continuously updated, and the former UK Database of Uncertainties about the Effects of Treatments. Within the framework of a Swedish governmental commission on mental health, we conducted a priority setting partnership to assess which of the identified evidence gaps regarding serious mental illnesses (SMI)2 were most urgent to address. A similar project regarding common mental illness is also envisioned. The aim of the current priority setting was to identify what patients, carers, clinicians and practitioners consider to be the most important outstanding research questions in the care of SMI. The interventions studied include prevention, diagnostics, treatment, support and social care, service delivery and coordination of healthcare and social care. Target groups for the report are researchers, research funders, government agencies and authors of systematic reviews.

The priority setting protocol used in the current study was akin to the James Lind Alliance (JLA) approach in which patients, carers and service providers together set the research agenda on the basis of what matters most to those with lived experience of SMI.3 The prioritisation protocol was based on an inventory of identified evidence gaps1 that were pre-itemised (figure 1) and endorsed by the Scientific Advisory Committee of SBU. The project management team consisted of project managers at SBU (MH, LW), senior consultants in psychiatry (MM, L-LB), a social work researcher (U-KS), a patient representative (CD) and a family representative (AKG).

Flow chart of prioritisation process

The SBU prioritisation approach in this study departed from the British JLA in the following ways: (i) the initial evidence gaps were identified from pre-existing databases and not from an open survey from the public and (ii) the SBU approach did not exclude researchers from the first-round anonymous survey, however, these accounted for only 8% of survey responses. The other steps of our study aligned well with the JLA approach, including (i) thematisation of entries into formulation of questions to be prioritised, (ii) broad initial prioritisation mainly conducted by patients, carers and professionals and (iii) a final workshop that was based on inclusivity, consensus and transparency, with equal representation of patient/carers and professionals directly working with SMI, and without including non-clinical researchers.

Approximately 500 evidence gaps were identified in the field of SMI. The priority setting included psychotic, bipolar and eating disorders, self-harm, severe depression, severe anxiety disorder including obsessive-compulsive disorder, severe personality disorder and suicidal behaviour. The existing evidence gaps were aggregated and thematised into 62 indicative research questions by the project management team, with great emphasis put on formulating them in such a way that they would easily be understood by all participants, including those with lived experience of SMI. A full list of underlying evidence gaps of each indicative research question is available at www.sbu.se/368. A flow chart of the prioritisation process and the indicative research questions is shown in the online supplemental file 1.

A first prioritisation was conducted as an open anonymous web survey where respondents selected their 10 topmost important questions without any ranking. 816 survey responses were received, equally divided between patients, carers, clinicians and practitioners. The responses were weighted separately for patients, carers and professionals to ensure equal influence and the top 25 questions proceeded to the final prioritisation workshop.

The priority setting workshop team consisted of 14 nominated representatives from Swedish patient and professional organisations in psychiatry and social care. Nominated representatives had to adhere to a predefined set of prerequisites for inclusion. The representatives covered individuals with lived experience from patient organisations for schizophrenia, bipolar disorder, eating disorder, self-harm and suicide, and professional organisations for adult psychiatry, child psychiatry, mental health nursing, psychologists, social work practitioners, psychiatric care assistants and social support workers. The priority setting workshop team reached a top 10 list through a Delphi approach, with results achieved by consensus. The project management team did not take part in the prioritising of research questions. Full report details can be found at www.sbu.se/368.4

The top 10 prioritised research questions are listed in table 1, ranked in the order of priority (1=highest ranked). The rationale for the prioritised research questions, as concluded by the final prioritisation workshop delegates, is presented in the underlying report.4

List of indicative research questions

These research priorities were selected and prioritised by a very broad group of representatives, including individuals with lived experience, carers and professionals who work with SMI. Several of the respondents of the web survey indicated that they had lived experience for several mental health conditions (66%) and experience with suicidal ideation (54%). Several respondents also indicated experience from multiple perspectives, for example, being both a patient and family member of a patient (31%) or being a health or social care staff and family member of a patient (20%). The final priority setting was conducted by representatives from a comprehensive set of patient and professional associations, making sure all crucial perspectives were included.

The final top 10 research priorities focus on important aspects of prevention and early assessment, service delivery and health systems and psychosocial support interventions. Several research questions from this report also coincide with those highlighted in previous priority setting reports in psychiatry,5 social work6 and regardless of type of medical condition as shown in recent priority settings from the JLA.7 Research needs that consistently rank high pertain to early assessment, diagnostics, coordination of care and support between different providers and disciplines, staff training interventions to improve competency and skills, shared decision-making, components of care and different types of psychosocial support interventions.4–6 A recent US White House report on mental health research priorities developed by research experts and service providers also highlighted similar priorities.8 One limitation of our study is that the evidence gaps are based on two databases, of which only one (SBU) is continuously updated. Another limitation is the departures from strict JLA protocol, including lack of independent JLA adviser during the process, and the fact that uncertainties, although several of them originated from patient/carer questions, were based on pre-existing databases.

The research questions highlighted here are broad and comprehensive and primarily targeted towards research funders, while the underlying specific evidence gaps are targeted towards researchers in health and social care. This report emphasises and reiterates the research questions that are particularly urgent in SMI and should inform future activities of funders and researchers. The Swedish Research Council for Health, Work and Welfare (www.forte.se) has announced that this report will be used in formulating upcoming grant calls.

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