Mental health consumers and primary care providers co-designing improvements and innovations: a scoping review
Kathryn Thorburn
A * , Bani Aadam A , Shifra Waks A , Brett Bellingham A , Mark F. Harris A , Karen R. Fisher B Catherine Spooner A
A
B
Abstract
Co-design and co-production are increasingly used to improve and innovate healthcare practices and services to better address people’s healthcare needs. Mental health consumers, especially people diagnosed with serious mental illness, experience considerable health disparities and barriers to primary care, while primary care providers experience barriers to addressing the healthcare needs of people diagnosed with serious mental illness. Both mental health consumers and primary care providers bring knowledge and expertise to improving mental health consumers’ health care. This scoping review of the peer-reviewed and grey literature was undertaken to determine the extent and scope of co-design and co-production involving mental health consumers and primary care providers to address mental health consumers’ healthcare needs. The review also sought to determine factors that enable or limit co-design and co-production involving mental health consumers and primary care providers. Twelve studies and reports of co-design and co-production involving mental health consumers and primary care providers were identified by the review. These studies showed that co-design and co-production were feasible and beneficial, and that there was significant scope for collaboration at the intersection of mental health and primary care services. Lessons learned from projects that have led the way include the need for (1) co-design/co-production practices that sustain equitable participation and address inevitable power imbalances when service users and service providers work together, (2) sufficient reporting on methods to ascertain claims of co-design/co-production and allow replication of these methods in similar healthcare improvement projects, and (3) co-design/co-production projects to be supported by other systems change strategies.
Keywords: co-design, co-production, health care, healthcare, mental health consumer, primary care, primary care provider, serious mental illness.
Introduction
People diagnosed with serious mental illness experience higher rates of comorbidity and early death due to preventable physical illness compared with the general population (Firth et al. 2019). Primary care plays a critical role in the health of people experiencing disadvantage and comorbidities (Stange et al. 2023). However, mental health consumers have experienced considerable barriers to primary care, including discriminatory attitudes, misattribution of physical health concerns to psychiatric symptoms, and inadequate referral to specialists (Ewart et al. 2016; Tabvuma et al. 2022). Concurrently, primary care providers reported greater discomfort when working with people diagnosed with serious mental illness than they do with the general population (Stone et al. 2019). The combined perspectives of mental health consumers and primary care providers have the potential to enhance understandings of barriers to consumers’ physical health care and lead to more acceptable and beneficial healthcare improvements (Pelletier et al. 2015).
Co-design and co-production are increasingly used to innovate in health care to better address people’s healthcare needs, reflecting a shift from consulting to partnering with service users as experts by experience (Palmer 2020). There are three main arguments for co-design and co-production outlined in the literature. Firstly, lived expertise and service use experience can improve (or even transform) healthcare practices and services because of the particular knowledge and insights lived perspectives can offer (Happell et al. 2016; Carrera et al. 2018). Secondly, co-design and co-production provide a generative space where interactions, processes and outcomes are undetermined and the possibility of co-creating new knowledge is high (Aveling and Jovchelovitch 2014; Sangiorgi et al. 2019). Thirdly, the benefits of co-design and co-production have potential to reach beyond those of the original objective, due to co-design’s ability to build relationships, knowledge and the capability of everyone involved (Renedo and Marston 2015; Roberts et al. 2018).
Published reviews of healthcare co-design show that co-design and related activities are occurring across a range of settings including oncology, stroke rehabilitation, emergency and intensive care, diabetes, paediatrics and mental health (Clarke et al. 2017; Green et al. 2020). Only one study of co-design involving primary care and mental health was included in these reviews (Green et al. 2020). An initial scan of the literature in preparation for this scoping review found a small number of co-design projects involving mental health consumers and primary care providers (Cranwell et al. 2015; Pelletier et al. 2015). While these projects suggest that co-design involving mental health consumers and primary care providers is viable and acceptable, further evidence is needed to confirm this.
This scoping review focused on the extent to which co-design and co-production with mental health consumers and primary care providers occurred in primary care contexts. It was undertaken to inform empirical research investigating the topic. The questions this scoping review sought to answer were:
What was the scope of co-design/co-production (types of projects and varying ways co-design/co-production was utilised) in primary care with mental health consumers?
What is the feasibility and utility of co-design/co-production projects involving mental health consumers and primary healthcare providers?
Methods
The review was conducted using the scoping review framework first proposed by Arksey and O’Malley (2005), further developed by Levac et al. (2010). It is consistent with the Joanna Briggs Institute (JBI) Manual for Evidence Synthesis: Scoping Reviews Protocol (Aromataris and Munn 2020). A protocol for this scoping review was registered with Open Science Framework on 6 January 2021 (Thorburn et al. 2021).
This scoping review used the PCC (Population/Concept/Context) framework recommended by JBI (Adelaide, Australia). This review was interested in the involvement of people diagnosed with serious mental illness (population) in co-design or co-production (concept) in primary care (context) because of inequities in access to health care experienced by people whose mental health condition was perceived as more severe or enduring (Stone et al. 2019). However, language is changing and increasingly the terms ‘people with lived experience’, ‘mental health service user’ and ‘mental health consumer’ have been used (Lyon and Mortimer-Jones 2020). Consequently, this review includes projects using all these terms and itself uses the terminology ‘mental health consumer/s’ or ‘service user/s’. The population did not include dementia, intellectual disability or alcohol and other substance use, although mental health consumers may experience these as co-occurring conditions.
The concept, co-design/co-production, was defined as a process where service users, families/carers, providers/professionals and other stakeholders work together in a spirit of equality, reciprocity and mutuality to design (‘co-design’), or to plan, design, deliver and evaluate (‘co-produce’) healthcare initiatives that best meet service users’ needs (Roper et al. 2018; Agency for Clinical Innovation (ACI) 2019). This review was specifically interested in co-design and co-production that brought all stakeholders to the decision-making process together. Related terms included were co-creation, citizen driven and participatory action research (Pearce et al. 2020). The context was primary care/primary health care including general practice/family practice which included general practitioners (GPs), family doctors, primary care physicians, practice nurses and primary care nurses. Due to the cross-sectional nature of projects, feasibility and utility were based on authors’ interpretations.
Eligibility criteria
Studies, reviews, protocols and reports published in English from 2000 to 2022 were eligible for inclusion if they discussed co-design or co-production projects as defined above involving mental health consumers and primary care providers. Grey literature searching was limited to documentation designed to disseminate findings and outcomes of relevant co-design activities.
Research, reports or reviews were excluded if they were judged not to reflect equal partnership and decision-making between consumers and providers, did not occur in primary care contexts or did not involve people with mental health lived experience. Other exclusions were materials that did not evaluate or review the evidence, such as newsletters, social media, policies and editorials.
Data sources and search strategy
An initial search using Medline and Scopus was conducted to identify words used in article titles and keywords and subject headings used in article descriptions. This process informed the overall search strategy which was customised to each data source:
Databases: CINAHL, Embase, Medline, PsycINFO and Scopus–key databases for studies relating to health and social sciences.
Google Scholar: for a broad search of published articles and grey literature and a useful adjunct to the database search.
Websites of organisations with established credibility in primary care, mental health and co-design/co-production/citizen participation.
Google and Grey Matters (CADTH 2019) for additional grey literature searching.
Full search strategies are listed in Supplementary material. Reference lists of all documents selected for inclusion were screened for additional relevant references.
Endnote (Clarivate Analytics, PA, USA) and Covidence systematic review software (Veritas Health Innovation, Melbourne, Australia) were used to manage the results of database searches. Endnote and Microsoft Word were used to manage the Google Scholar, website and other grey literature searches. Titles and abstracts of all included peer-reviewed articles were screened according to review inclusion criteria by two reviewers (KT and BA or SW). The full text of each included article was then assessed in detail against the review inclusion criteria (KT and BB or CS or MH). Any disagreements between reviewers about study inclusion/exclusion were resolved through discussion. The grey literature search was conducted by KT, BA and SW, who each took responsibility for certain components of the search and discussed their findings in meetings or via email. References determined suitable for inclusion underwent a full text review against inclusion criteria by two reviewers (KT and BB or MH).
Data extraction and quality assessment
A data extraction table was adapted from the JBI Manual for Evidence Synthesis, Chapter 11.2.7 (Aromataris and Munn 2020) to include data pertaining to co-design/co-production participants, methods and outcome, as well as any other details pertaining to the research questions. Quality assessments were undertaken by KT and reviewed with CS, KF and MH.
Results
Study selection
As presented in Fig. 1, the database search identified 1387 articles after removing 449 duplicates. Title/abstract review excluded 1346 articles that did not meet inclusion criteria. Forty-one full text articles were assessed against inclusion criteria leaving eight articles included. The grey literature and website searches identified six references for inclusion and a hand search of reference lists identified two references for inclusion. Sixteen references (12 peer-reviewed, four grey literature) underwent data extraction and quality assessment. Three studies had multiple publications (Abayneh, Cranwell and Latif) resulting in 12 studies in total. Studies are referred to by first author.
Description of included studies
(See also Table 1 for detailed descriptions of included studies). Although the search covered literature published between 2000 and 2022, none of the included studies were published before 2015, with half published between 2020 and 2022. Five were study protocols of which two have been completed and reported. This reflects recent and increasing use of co-design/co-production in health, especially primary care. Most studies took place in Australia (5), England (3) or Ethiopia (2). One study occurred in Canada and another in Denmark. Reporting varied considerably and it could be difficult to determine numbers and identities of participant groups (service users, families/carers, service providers, other stakeholders), methods employed and processes for equitable participation.
| Author (year) Country Reference type A Rating B | Overall study | Co-design/co-production study component | ||||||
|---|---|---|---|---|---|---|---|---|
| Aims/objective | Method/s | Conclusions | Aims/purpose | Participants | Method/process | Outcomes | ||
| Abayneh et al. (2022) Ethiopia Research article Rating 9/10 | To pilot a model of service-user involvement in primary MH system strengthening in Ethiopia. | Qualitative case study using PAR. Research Advisory Group (RAG) and Research Participant Group (RPG) with >50% lived experience. | Collaborating with diverse stakeholders including service users benefitted services and service users. Challenges were socio-economic factors, resource limitations and policy deficits. | Explore priorities for primary MH service strengthening. Select a priority and develop an intervention and action plan. | MH service users, families/carers, health workers, government/community workers. |
| Initial findings disseminated via public workshop; increased stakeholder awareness of mental illness; service-user testimonies; proposed a way forward for collaboration. | |
| Abayneh et al. (2020) Ethiopia Study protocol Rating N/A (protocol) | To describe plans to test a model of service users and health professionals collaborating to improve MH care. | PAR (using qualitative methods). Research Advisory Group (RAG) with lived experience plus other stakeholders. | N/A (protocol). | Identify an area of concern about the integration of MH into primary health care. Develop an action plan and assist implementation. | Research Participant Group (RPG) of 12 participants: Four service users, four caregivers and four health professionals/facility managers. |
| Develop and implement a plan of action for an identified area of concern with respect to integration of MH into primary health care. | |
| CESPHN (2023) Australia Grey literature report Rating N/A (grey literature) | To address the delay between GP referral and specialist MH intake experienced by consumers due to demand for MH services. | Expert working group interviews. Draft resources to support service-users through delays between GP referral and MH intake. Prototype resource and obtain feedback from key users. | Support ongoing stakeholder collaboration throughout a project. Regularly evaluate for improvement. Projects might not always go to plan, but you can still work toward a common goal. | Two prototyping sessions designed to refine the resource (initially developed by GPs). | Consumers, carers, GPs and PHN staff. | Experience mapping and user testing to review and refine the resource. Co-create the design brief for the set of resources. |
| |
| Cranwell et al. (2016) Australia Research article Rating 7/10 | To improve the care and experience of MH service users with medical co-morbidity when moving between tertiary and primary care. | Qualitative study involving a focus group (Experience Based Co-Design (EBCD) workshop) which was part of a broader study and co-design process. | The three outputs are worthwhile initiatives. Research is needed to evaluate their efficacy. More needs to be done to address other barriers. | To identify ways to improve the care and experience of MH service users with medical co-morbidity when moving between tertiary and primary care. | Five MH service users with medical co-morbidity, two caregivers, five mental health clinicians, one GP. | EBCD – experience gathering and joint workshop (‘combined focus group discussion’) to negotiate co-design strategies and initiatives. |
| |
| Cranwell et al. (2015) Australia Grey literature report Rating N/A (grey literature) | To use Experience Based Co Design (EBCD) to improve consumers’ experiences transitioning through tertiary services to primary care and self-management support. | EBCD: Perspectives of consumers and staff (interviews/focus group, analysed and themed), short film of consumer perspectives. A joint workshop to co-identify improvements. Improve via 1:1 consultation. | Initiatives were developed and implemented. Consumers and carers agreed that initiatives would be beneficial. Difficulty engaging key staff impacted project. Potential to extend consumer participation to partnership and co-design. | To improve consumers’ experiences of MH services as they transition through tertiary services to primary care and self-management support. | Consumers (with MH and complex care needs), carers, MH service staff and a GP. | EBCD approach adapted whereby co-design activities instead occurred through 1:1 consultation with consumers and carers and a separate meeting with staff. |
| |
| Demissie et al. (2021) Ethiopia Research article Rating 8.5/10 | To develop a contextualised, scalable and manualised psychological intervention for people with bipolar disorder able to be delivered by primary health care workers in rural Ethiopia. | Medical Research Council (MRC) Framework for Development and Evaluation of Complex Interventions with a theory-of-change (ToC) approach. Expert workshop and five ToC workshops. | Approach led to:
| To determine acceptability and feasibility of the intervention and resources required. To suggest the intervention content, format and providers, define desired outcome and indicators of success. | People with bipolar disorder and their caregivers, women community leaders, male community and religious leaders, primary health care workers and government personnel. | Four draft ToC maps (one per workshop) were developed via discussion and consensus, then combined by the authors into a single ToC map. The final draft ToC map was refined and approved in the fifth ToC work-shop with all ToC participant groups. |
| |
| LaMonica et al. (2022) Australia Research article Rating 6/10 | To co-design, implement, and evaluate novel health information technologies (HITs) to work with standard healthcare organisations in MH care. | Participatory design workshops to co-design, develop and refine a digital platform to transform MH care of young people. Prototypes iterated into a beta version for end user testing. | Strong support for HITs as part of clinical care, but need to consider credibility, data privacy, security. Inconsistencies in health service attitudes toward HITs. Service mapping effective way to engage key stakeholders around MH care. | To co-design a novel HIT platform (Innowell) that aims to improve MH care in a range of settings including primary care. | Target end users (service users and providers). NOTE: lack of information about other stakeholders. A participating site was a Western Sydney general practice. | Participatory design workshops (e.g. prototypes, user journeys, and personas). User acceptance testing (e.g. ‘think aloud’, scenarios). Service mapping sessions (e.g. a process mapping methodology). | For the primary care site: an innovative model of primary care, expanded treatment options, reduced GP assessment, more time for enhanced care to more service users. | |
| Latif et al. (2019a) England Grey literature report Rating N/A (grey literature) | To co-produce and test an e-learning resource for pharmacy staff involved in structured medication reviews in primary care. | Four half-day co-production workshops to develop the e-learning resource and ten one-to-one interviews with patients from marginalised groups to confirm and further the workshop findings. | The resource engaged and improved the perceived capabilities of pharmacy staff towards underserved groups. Organisational barriers may hinder translation of learning to effective behaviour change. | To develop an e-learning resource for pharmacy staff working within primary care involved in structured medication reviews, using a co-production approach. | Thrity-three people from marginalised groups including people diagnosed with serious mental illness. Twenty-four community pharmacy staff and owners; superintendent pharmacists, pharmacy professional and educational bodies. | Participants attended one of four half-day co-production workshops where the e-learning contents were built incrementally and refined via written reports, and group suggestions captured on storyboards. | E-learning resource for:
| |
| Latif et al. (2019b) England Research article Rating 7/10 | To co-produce and evaluate an e-learning resource to improve medication reviews for medically underserved groups with underserved communities and pharmacy professionals. | Interventional study with a before/after comparison design to evaluate a co-produced e-learning resource. Advisory Panel with two representatives from under-served communities. | The e-learning resource improved the perceived capabilities of pharmacy professionals to engage with people who are medically underserved but may not be sufficient to bring about practice change on its own. | To co-produce an e-learning resource for pharmacists to improve provision of Medicine User Reviews (MURs) to underserved communities. | People from underserved communities (including people diagnosed with serious mental illness), community pharmacy staff, pharmacy owners, pharmacy professional body representatives. | Two initial workshops focussed on capturing themes through stories and experiences, then an iterative development process via two ‘review’ workshops with patients from underserved communities and pharmacy teams. | An e-learning resource to improve MURs by community pharmacists to underserved communities, which improved perceived capabilities of pharmacy staff to engage people from underserved communities. | |
| Latif et al. (2016) England Study protocol Rating N/A (protocol) | To investigate whether a co-produced educational intervention can change pharmacy staff attitudes and behaviour to improve medicine reviews with underserved groups. | Mixed-methods evaluative study. Stage 1: co-production of e-learning resource through mixed patient–professional workshops. Stage 2: implementation and evaluation of e-learning resource. | N/A (protocol). | To co-produce an e-learning resource for pharmacists to improve provision of Medicine User Reviews (MURs) to underserved communities. | People from underserved communities (including people diagnosed with mental illness), community pharmacy staff, pharmacy owners, pharmacy professional body representatives. | Two initial workshops will capture themes through stories and experiences, then an iterative e-learning development process via two ‘review’ workshops involving patients from underserved communities and pharmacy teams. | Intended outcome: An e-learning resource for pharmacists to improve the provision and number of MURs to underserved communities. | |
| Lewis et al. (2020) Australia Study protocol Rating N/A (protocol) | To determine if a co-produced Assertive Cardiac Care Trial (ACCT) intervention reduces the 5-year absolute cardiovascular disease risk (ACVDR) in people diagnosed with serious mental illness. | A stratified, individually randomised controlled trial (RCT) of a 12-month co-produced assertive cardiac care intervention for individuals diagnosed with serious mental illness attending general practice. | N/A (protocol). | To co-produce an intervention for people diagnosed with serious mental illness to reduce their cardiovascular disease (CVD) risk. | People with lived experience of serious mental illness, a multidisciplinary team of clinicians and MH researchers. | Six iterative cycles with people with lived experience to determine how to (a) present heart health information, (b) develop tools to support risk conversations and decisions, (c) encourage uptake of interventions to reduce CVD risk and (d) co-design an intervention. | The ACCT intervention, a co-produced nurse-led collaboration with GPs to deliver multifactorial CVD risk reduction. | |
| Lwembe et al. (2017) England Research article Rating 7/10 | To evaluate a co-production approach for delivering psychological therapies services to BME (black and minority ethnic) people. | Participatory research with multiple stakeholders co-designing and co-delivering the initiative. Qualitative methods (interviews and focus group). The lead researcher was embedded as a participant observer. | Barriers to primary care MH services were reduced and the service was extended to neighbouring boroughs. Key factors were expert patient role, MH practitioner cultural competency and stakeholder joint decision-making. | To address the inequalities in access to and outcomes of primary care MH services in the locality by black and minority ethnic people. | People diagnosed with mild to moderate mental illness, public health agencies, a community organisation and MH practitioners. | Co-design and co-delivery of the service. (Details of process not provided.) | Local residents trained as MH champions to outreach into local community. Psychological interventions co-delivered by MH practitioners and an expert patient. Ongoing monitoring and evaluation. | |
| Marcussen et al. (2022) Denmark Study protocol Rating N/A (protocol) | To develop and test a shared care intervention in co-production with users. | Narrative systematic review. Gap analysis (user perspectives on shared care). Co-production workshops. Test using a non-randomised intervention study with control group. | N/A (protocol). | To develop a shared care intervention in co-production with users (patients and healthcare professionals). | Steering and project group: people living with anxiety or depression and providers from MH services and/or general practice. More than 50% representation of people with lived experience. | Workshops involving users and the research team to create the first iteration of the intervention and suggest relevant outcomes. Reflection on experiences will inform further adjustments to the intervention. | A shared care intervention – yet to be co-produced. | |
| Pelletier et al. (2015) Canada Research article Rating 7.5/10 | To explore the feasibility and acceptability of patient partnership for developing an interactive guide to improve access to primary care for chronic disease management and health promotion among patients with severe mental illnesses. | PAR involving study participants as research partners (RAs) in developing the interactive guide and piloting its use. | Equitable access to primary care can be improved using a tool like the Interactive Guide to Medical Appointments (IGMA). Small group learning can foster interactivity and collective social support among patients using the IGMA. | To develop an interactive guide to improve access to primary care providers for chronic diseases management and health promotion among patients with severe mental illnesses. | Co-research team: People diagnosed with mental illness, physician with mental illness, GP, psychiatrist, professor of nursing, carers, Local Health Authority and International Program for PAR. Advisory Board: A range of experts including two patients. | IGMA questions gathered by lived experience RAs and physician with lived experience, selected by GP and psychiatrist, with Advisory Board input. Descriptions of symptoms relevant to each of the 33 selected questions were developed into lay language videos. | The IGMA, a 33-item questionnaire on an electronic touch screen tablet with 33 short videos depicting common chronic disease symptoms and risk factors. Small group learning sessions for patient partners. | |
| Plappert et al. (2021) England Study protocol Rating N/A (protocol) | To evaluate the effectiveness of PARTNERS2 to address the MH, physical health and social care needs of people with long term MH problems. To explore the benefits of a coaching-based collaborative model to assist with recovery. | A cluster randomised controlled superiority trial comparing PARTNERS2 with usual care and an internal pilot to assess feasibility. Co-designed research. Co-designed, co-delivered intervention. Co-decided trial outcomes. | N/A (protocol). | To use a co-production approach to evaluate the clinical and cost-effectiveness of the PARTNERS2 intervention. | Intervention co-produced by people with lived experience of ongoing MH needs, clinical academics and researchers. People with lived experience engaged through Lived Experience Advisory Panels. | Indicates that people with lived experience were involved in decisions e.g. in relation to trial outcomes will have significant involvement across the study. Also, that Care Partner training was co-designed and co-delivered. | Co-produced: Grant application, recruitment materials, interview schedules, study website. Lived experience researchers involved in recruitment and other study roles. Co-designed: Care Partner training, trial outcomes. | |
| Sector Connect Inc (2017) Australia Grey literature report Rating N/A | To co-design a brief for a trial integrated sub-specialty clinic within a general practice that delivers wrap around clinical care, care coordination and appropriate referrals for people living with serious mental illness. | Broad initial consultation with 205 stakeholders, followed by a co-design workshop with 14 key participants to further refine the proposed model and how it may be managed. | Agreed model that new service will be based around a general practice, with coordination between GPs and related primary care personnel, MH services, social support services and other allied health services. | To co-design a brief for a trial integrated sub-specialty clinic within a general practice that delivers wrap around clinical care, care coordination and appropriate referrals for people living with severe mental illness. | Consumers, carers, primary and MH care providers, Local Health District, non-government services, private providers and other local stakeholders. Number of consumer/carer representatives not reported. | A series of evaluation, brainstorming and prioritisation sessions deciding services to be included, how coordination/integration occur, governance, scalability, sustainability and trial clinic location. | A preferred design for the proposed service, with a summary of participant feedback and recommendations on suggested contract conditions and implementation principles. | |
Equitable partnership and collaborative decision-making are defining characteristics of co-design and co-production (Arnstein 1969; Daya n.d.), evidence of which were criteria for inclusion. Claiming co-design/co-production without demonstrating equitable participation was a common reason for exclusion at the full text screening stage. In 32% of exclusions, information provided was insufficient to make such a determination. However, the most common reason for exclusion was that the co-design/co-production process did not involve consumers and providers, or the two groups’ contributions were treated separately (58%). The remaining 10% reflected consultation or co-analysis, rather than co-design/co-production.
Scope of co-design/co-production in primary care with mental health consumers
Co-design/co-production projects included learning resources (Abayneh, Latif), psychosocial interventions (Demissie, LaMonica, CESPHN), physical health interventions (Lewis, Pelletier), improved collaboration or transition of care between services (Cranwell, Plappert), and new or improved service delivery models (Lwembe, Marcussen, SWSPHN). The approach employed appeared to correlate to location. The projects in Ethiopia (Abayneh, Demisse) employed participatory action pesearch (PAR) (where affected community members collaborate in research) with a Theory of Change (ToC) model, while projects based in England (Latif, Lwembe, Plappert) used co-production. Australian studies mainly employed co-design (CESPHN, Cranwell, LaMonica, SWSPHN).
Information about the roles and perspectives of project participants (consumers and providers) varied. Three projects involved community pharmacy staff (Latif) or community workers in primary health care (Abayneh, Demisse) while the remaining projects involved (or planned to involve) general/family practices. Challenges recruiting primary care providers were reported in one study (Cranwell). The number and perspectives of co-design/co-production participants were not explicitly reported in some studies (e.g. LaMonica, SWSPHN) which made it difficult to determine the involvement of service users compared to service providers and other stakeholders. Most studies described efforts to recruit project participants (consumers and providers) who represented the population for whom the improvement/innovation was intended, primarily via relevant services/organisations using purposive sampling (Cranwell, Demissie, Latif, Lwembe, Abayneh, Marcussen) and PAR (Pelletier).
Feasibility and utility of co-design/co-production projects involving mental health consumers and primary healthcare providers
All projects indicated that co-design/co-production involving mental health consumers and primary care providers to develop healthcare initiatives was feasible. Three studies reported on co-designing/co-producing and testing an initiative (LaMonica, Latif and Pelletier), and one evaluated an existing co-produced initiative (Lwembe). All these four studies found the co-designed/co-produced initiative effective. Latif et al. (2019b) identified that certain systemic and structural (social, political and economic-related) factors may have impeded uptake of their e-learning resource which improved pharmacy staff’s perceived ability to engage with marginalised communities.
Of the 12 studies, three had only published protocols at the time of this review, two planned to test an existing co-produced initiative (Lewis, Plappert) and one planned to co-produce and test an initiative (Marcussen). More than 50% of included projects involved testing the co-designed/co-produced initiative. The remaining projects evaluated co-design/co-production processes and outputs to varying degrees. In two projects, the initiative had already been conceived (CESPHN, SWSPHN). One project concluded that it is worth introducing collaborative approaches, even part-way through a project, if this occurs transparently (CESPHN), however, the authors did not discuss the reason for introducing consumer partnership at this stage in their project.
The review identified factors impacting primary care staff involvement in co-design/co-production. Factors included the pressure of working in health care (Abayneh, Cranwell, LaMonica), challenges for staff in hearing service users’ negative experiences (Cranwell), service culture and structural factors that impact implementation (LaMonica, Latif) and policy deficits (Abayneh). Several challenges meant one project (Cranwell) did not follow up a joint (service user–provider) workshop with the intended co-design process, instead undertaking individual consultations with service user participants.
The four studies that tested co-designed outputs (LaMonica, Latif, Lwembe, Pelletier) concluded that these outputs were beneficial for consumers, service providers or both. Three of these studies concluded that the co-designed/co-produced initiative facilitated access to primary care for people who may experience barriers due to disadvantage, social distance or cultural factors (Latif, Lwembe, Pelletier). Positive outcomes did not necessarily guarantee that implementation of the co-designed outputs was sustained beyond the testing phase.
Processes that supported equitable participation of service users and providers were only referred to by studies that engaged a PAR approach (Abayneh, Demissie, Pelletier). Of these, one study was explicit about representation of key stakeholders in the research team (Pelletier). Overall, co-design/co-production participants’ and researchers’ identities (service user, service provider or other stakeholder) and processes designed to support equal collaboration were under-reported. These findings point to important lessons about power and equitable participation, change implementation and thorough reporting for primary care co-design/co-production initiatives involving mental health consumers.
Discussion
This scoping review has shown there is considerable scope for co-design and co-production initiatives involving mental health consumers in primary care and that such projects are increasing. Furthermore, combining lived and professional knowledge could lead to even greater variation of initiatives as realisation of what is possible develops (Palmer 2020). Although not all projects successfully met their main objective, they all identified the value of bringing service users and providers together. Beyond developing solutions, co-design/co-production fostered improved service user–service provider mutual understanding and relationships, and led to shifts in attitudes and practices (Pelletier et al. 2015; Roberts et al. 2018). Several projects identified that such initiatives were a starting point for further service improvement and ongoing collaboration (e.g. Cranwell). Sustaining change is a challenge for many new initiatives, whether or not they are co-designed/co-produced (Maher et al. 2017). ToC mapping (or equivalent processes) could be a strategy for similar projects wishing to strengthen and sustain co-created change. Other change management processes could also be applied to support sustainability of co-designed/co-produced initiatives (Maher et al. 2017).
While there is much to be gained from these collaborative endeavours, there is also much to learn to ensure co-design/co-production create equitable spaces for knowledge creation and decision-making as is implied when these terms are used (Ní Shé and Harrison 2021). Co-design/co-production and PAR share a commitment to the democratisation of knowledge (Rose and Kalathil 2019). Co-design/co-production projects could be more explicit about processes that support equitable participation and attend to inevitable power imbalances when service users and service providers collaborate. A research team that reflects the same diversity as the co-design/co-production team might better embody equity and collaboration and benefit research processes in a similar way to co-design/co-production processes (Beresford 2019). In one study, the lead identified as a physician with mental illness (Pelletier) which may have positively influenced the representation and participation of GPs and people with lived experience and helped to balance power in this study. Transparent reporting on ways that parity of representation, participation and decision-making are achieved in co-design projects provides evidence for claims that co-design or co-production were employed (e.g. Duggan et al. 2024) and will also enable replication of these strategies by other projects.
This review suggests that understanding the barriers to primary care providers’ involvement in co-design/co-production and equitable participation of consumers and primary care providers could promote feasibility of co-design/co-production projects in primary health care. Furthermore, approaches to testing the utility of co-design/co-production outputs that enable comparison of outcomes could clarify the benefits of co-design/co-production for innovation and improved outcomes in primary health care.
Strengths and limitations
This review took a systematic approach to identifying studies for inclusion, including the range of terminology used to describe the population, concept and context. The search cast a wide net across peer-reviewed and grey literature to minimise the possibility that relevant studies could be missed. However, the tendency for co-design and co-production projects to be reported informally might be a limiting factor in this review. Other limitations related to inconsistencies and omissions in the reporting of co-design/co-production activities, which made it difficult to determine whether terms like co-design and co-production were being used to describe initiatives accurately.
Conclusion
This scoping review confirms a small but growing interest in research on the use of co-design, co-production and other collaborative approaches with people who use mental health and primary care services, primary care providers and other stakeholders, demonstrating that such projects can be feasible and beneficial. The diversity of projects that met inclusion criteria suggests there is considerable scope for collaborative practices at the intersection of mental health and primary care services. There is much to learn from the efforts of people and services who have led the way. Reporting on collaborative approaches, especially in terms of participation, power and decision-making would help to determine the extent to which claims of co-design are reflected in practice. This would also allow others to identify and progress effective practices as such initiatives may lead to shifts in service improvement approaches and embed ongoing collaborative practice to improve and innovate in primary health care.
Data availability
Data used to generate the findings of this scoping review is available by contacting the corresponding author.
Declaration of funding
This review was supported by a PhD Scientia Australian Government Research Training Program (RTP) Scholarship and funding from the International Centre for Future Health Systems, University of New South Wales, Sydney (the Centre for Primary Health Care and Equity at the time this scoping review was conducted).
Author contributions
All authors of this study meet the authorship criteria according to the latest guidelines of the International Committee of Medical Journal Editors, and all authors are in agreement with the manuscript.
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