Table 3 Priority setting characteristics
Paper | Location | Participants | Aim and purpose | Guiding framework/design | Methods | Outcome |
|---|---|---|---|---|---|---|
Aboaja et al. [32] | United Kingdom | Patients from both prison and forensic hospital settings (no numbers available) | Involve patients with research priorities in forensic services | Consensus methodology using the Delphi method | • Information gathering ascertaining patient priorities in phase 1, ranking these in order of importance in Phase 2: • Community meetings chaired by a senior nurse (who collated data) guided discussions around three questions: 1. What questions should researchers try to answer? 2. What discovery would you most like researchers to make? 3. What do we need to know more about in forensic services? • Analysis conducted overall by two consultant psychiatrists, in-patient nurse, ward-based staff nurse and a senior prison nurse | Top 3 research gap themes |
Banfield et al. [35] | Australia | Self-identified mental health ‘consumers’ (n = 50) | Explore patient priorities for depression and bipolar disorder research | None identified | • Focus groups with patients and telephone interviews with consumer advocates • Participants discussed topics believed were priorities • Priorities of top 3 ideas ranked • Transcripts were thematically analysed using NVivo 7 | 16 themes of research gaps without apparent consensus on top 3 priorities |
Banfield et al. [36] | Australia | Forum: Patients (termed consumers) (n = 14), carers (n = 5), carers and patients (n = 5) Online survey: Consumers and/or carers (n = 70) | Determine priorities for research driven by the views of consumers and carers | None identified | • Face-to-face forum, then national online survey • Forum participants developed topics for research in small group discussions and then voted on priority using a “dot-mocracy” approach—placing adhesive dots to vote for topics seen important for research • Online survey developed from the voting. Participants were asked to rate these topics on a 5-point priority scale and rank the importance of the highest-rated topics | 87 research themes identified without apparent consensus on top 3 priorities |
Canada | Steering group: people with depression (n = 6), caregiver (n = 1), clinicians (n = 4), researchers (n = 5), and members of the Alberta Depression Research Priority Setting Project planning committee (organisation leading the priority setting) (n = 2) Online and paper survey: respondents with depression (n = 445) Online rating: respondents (unclear if these had depression) (n = 49) Workshop: Steering group members (n = 11), clinicians, health care professionals and people with depression (n = 9) | Identify patient research priorities involving most unanswered questions about depression | Informed by the James Lind Alliance (JLA) approach and “funnel approach” [31:E399] | • 6-step funnel process to gather and prioritise questions facilitated by a steering committee: - 1. Online and paper survey 2. Open-ended questions reviewed by steering group 3. Online rating survey using a 5-point Likert scale 4. Workshop to identify the top 10 questions 5. Literature review of top 11 questions regarding originality 6. The final report was shared through the media | 11 research questions, unclear if ordered in priority but are listed 1–11 | |
Chamberlain et al. [38] | Canada/Sweden/United Kingdom/ United states | Online survey: distributed to members of Voices Of Individuals, family and friend Caregivers Educating uS (VOICES) involving Researchers (n = 40), health stakeholders (n = 20), and citizen advisory committee involving those living in residential care, living with dementia, alongside family, friends and caregivers (no numbers) Workshops: non-researchers (no further data available) | Identify research questions within existing Translating Research in Elder Care Program data | Informed by JLA approach | • Online survey analysed by researchers • Survey data examined in workshops using Nominal Group Technique (NGT) and sequential ranking to home in priorities | 10 research questions unclear if ordered in priority but are listed 1–10 |
Emrich-Mills et al. [33] | United Kingdom | Patients aligned to the healthcare organisation leading the priority setting, including family, friends or other caregivers, and clinical staff Anonymous online survey: respondents (n = 126) Second survey: respondents: (n = 58) Workshop: participants: (n = 26) | Identify patient and staff research priorities to inform funding applications to address local needs | Informed by JLA approach | • Anonymous online survey to collect research interests from stakeholders then categorised electronically • Systematic search of the literature was conducted to assess the originality of questions, following PRISMA guidelines • Second survey ranking top ten using 6 different versions with different ordering of questions, grouped relevant to the organisation • Questions were reviewed in the workshop using NGT and sequential ranking to home in priorities | 10 research questions ranked in order of priority |
Forsman et al. [42] [addendum paper by Fiorillo et al. [48] highlighted the participants involved] | Europe | Mapping of research, workshops, and emails: Published scientific experts (n = 29) Surveys and workshops: renowned researchers (n = 59) and other experts (n = 44). The project also involved psychiatrists (n = 31), other mental health professionals (n = 30), patients/carers (n = 23) and trainees (n = 20) [48], though unclear if this sample is the same as above | Develop standardised measures to investigate ranked determinates of mental health | Roadmap for mental health research in Europe project method (ROAMER) | • Mapping of published research advances, to identify developments and gaps over the last 10 years • Workshops and emails from participants identified questions These were grouped in terms of effectiveness, deliverability, and feasibility • 3 × modified Delphi web-based surveys (DWBS) were conducted sequentially, to gain consensus on research priorities DWBS 1—Assessed relevancy of questions DWBS 2—Ranking based on general, methodological and research topic priorities • Second workshop to home in priorities. based on the criteria of the second Delphia survey DWBS 3—Final survey ranked themes | • Summary principles generated in terms of informing mental health research • Ranking of priority themes • Themes categorised to specific goals to aid societal mental health |
Ghisoni et al. [34] | United Kingdom | Workshop: mental health professionals (n = 5) and people with mental ill-health (n = 20), some also carers (n = 3) | To explore research priorities from the perspectives of people with lived experience of mental illness, their carers, and clinicians | None identified | • A qualitative NGT employed • Workshop to introduce exercise • ‘Brainstorming’ at 6 Workstations exploring pre-existing themes • Ideas condensed on a flip chart • 3 rounds of voting using workstation themes, preferred research according to patients and carers, feasibility voting of research that could occur now and be funded | One research question received most votes while another question was noted as most discussed |
Gregório et al. [39] | Brazil | Researchers (n = 22) and policymakers (n = 5) | Review the agenda for research priorities | Informed by Child and Nutrition Research Initiative (CHNRI) approach | • Participants list on their own the most relevant research questions for the next 10 years. Responses were distributed following predefined research areas informed by policies and a literature review (not conducted by the priority setting group): 1. Improve in place health systems 2. Improve the efficiency of health systems in place focusing on health policy and systems 3. Improve affordability and deliverability of existing interventions 4. Develop new mental health interventions • The most significant questions were ranked • Questions scored addressed Answerable, Effectiveness, Deliverability, Equitable, and Reducing mental illness • Ten highest ranked questions were selected | 10 research topics ranked in order of priority |
Hart and Wade [37] | Australia | Eating disorder specialist (n = 103), patients/carers (n = 109) and affiliates (n = 53) | Consensus building among clinicians, researchers, carers, consumers, and interested members on the priorities for eating disorders research | Referred to as a Delphi study | • Employed Delphi expert consensus • Online survey—Qualtrics—rating research areas, and research domains in order of priority. National Collaboration for Eating Disorders (NEDC) provided areas for priorities • Leading scientist in the field met to review for research areas that could be priorities, these were then added • Research areas are grouped into domains according to thematic analysis • The first-round survey involved ranking seven broad research domains in order of priority for consensus on the top funding priorities | 22 ‘essential’ themes ranked in order of priority |
Kühne et al. [41] | Germany | Email survey: Clinicians (n = 8) Internet-based survey: patients (n = 63) | Meta-review and survey of professionals and patients concerning psychotherapy and obsessive–compulsive disorder (OCD) research priorities | Informed by JLA approach | • Meta-review of databases re-aim • German S3-Guideline references on OCD searched with 19 reviews identified • 10 priorities were generated from the discussion of reviews and then phrased as a question for subsequent surveys • Email survey. 5 most important priorities identified following open-ended question to identifying priorities, ranking each (clinicians) • Internet-based survey. Open question regarding 5 top priorities and then ranked the 10 identified previously (patients) • Non-parametric tests to compare agreement | Top 5 Patients and clinicians views ranked owing to similarities only one top 5 list produced |
Lee et al. [43] | Global settings | Generating terms of reference: Psychosocial support (PS) in humanitarian settings stakeholders (n = 109) Online survey: Same stakeholders (n = 87) | Consensus building on psychosocial support (PSS) interventions using evidence and stakeholder opinions | None identified | • Mixed methods with recording discussion, voting, and statistical ranking • Phases involved individual consultation • Expertise consisted of; 2 regional meetings, 4 webinars, and a series of priority setting exercises Process: Briefing on project focus—no specific operational definition for interventions Stakeholder engagement to generate terms of reference for priority setting A systematic review to identify the research area NGT to develop a priority PSS program list Online survey to rank priorities NGT to further priorities outcomes alongside ranking Webinars / Series of priority setting exercises and Consultation and agreement across stakeholders to agree on the priorities Individual consultation involving steering group to gather recommendations for research topics Concluding online survey to vote on priorities | 16 programs/areas relevant to PSS through voting frequency counts without apparent consensus on top 3 priorities |
Zitko et al. [40] | Chile | Initial interviews: Members of the Ministry of Health (n = 6) Focus groups: Three in total, one with representatives of patient groups (n = 6), second members of the National Commission for the Protection of Persons with Mental Disorders (n = 5), and the third clinicians (n = 7) Online consultations: academics (n = 63) Final prioritisation: consultants (n = 2), epidemiologist (n = 1) and psychiatrist with public policy training (n = 1) | Identify and prioritise national research gaps | Informed by CHNRI approach | • Stage 1: 4 × strategies to identify knowledge gaps document analysis, interviews and focus groups, alongside online consultation of the scientific community • Stage 2: Elaboration and application of prioritisation criteria for ranking each research question in terms of the knowledge gap, breadth of the relevant population, their vulnerability, potential risks and benefits, information urgency and application | 10 questions relevant to government policy ranked in order of priority |