Creating the conditions for collaborative decision-making in co-design

ABSTRACT

Research into co-designers’ experience of co-design processes is uncommon, despite expanding use of co-design to improve and innovate in healthcare. This study aimed to identify how an online co-design was experienced, how it achieved its outcomes and the implications for healthcare co-design. Eleven co-designers were interviewed about their participation in an online, lived experience co-led, co-design that aimed to improve the physical healthcare of mental health service users in primary care and mental health settings. Analysis of group and individual interviews and co-design documentation involved an initial inductive coding process, followed by a more focussed theoretical coding process and the application of an existing conceptual framework to test the analysis. Three themes were identified – generating knowledge, creating space and influencing change. Each theme was characterised by underlying interdependent tensions – individual and collective, stabilising and transforming, internal and external, which operated together to facilitate collaboration. Time was an essential resource for engaging these processes. Efforts to create the conditions for co-design in healthcare may be enhanced when attention and time is given to underlying interdependent tensions that interact to support knowledge co-creation, collaboration and change.

KEYWORDS:

• Co-design
• co-designer experience
• collaborative decisions
• healthcare
• primary care

1. Introduction

There is evidence of extensive and increasing use of co-design to improve practices, services, policy and research in healthcare internationally (Ní Shé and Harrison 2021). Co-design, a process for developing solutions to complex problems that privileges lived expertise, actively involves people affected by an issue or service as expert collaborators, along with providers and other stakeholders (Blomkamp 2018, 733; McKercher 2020). In healthcare, co-design reflects a shift in healthcare improvement approaches from consultation to more equitable involvement and decision-making (Palmer 2020, 1). Its rise in healthcare is driven by complex influences including user-centred design (Bate and Robert 2006), consumer empowerment (Meskó and deBronkart 2022) and human rights (Cataldo et al. 2021) reflecting a paradigm shift from patients as recipients of experts’ care to informed, experienced consumers (deBronkart 2018). This is especially relevant in mental health where service user knowledge has historically been discredited (Rose and Kalathil 2019).

The grey and peer reviewed literature identifies various benefits of co-design in healthcare including idea generation, improved services, and achievement of outcomes (Blomkamp 2018). The advantages are thought to extend beyond products and services to consumer-provider interactions and relationships (Roberts et al. 2018). While the evidence base for co-design in healthcare is growing, there is a gap with respect to its everyday application (Tindall et al. 2021, 1693). There is a need to improve our understanding of co-design processes and outcomes, and the experience of participation by people with lived experience, families/carers, clinicians/providers and other stakeholders (Palmer 2020).

Co-design requires particular attention to power, especially in contexts characterised by deep-seated power imbalances and/or with people who experience inequity (Hodson, Svanda, and Dadashi 2023, 12) such as healthcare. Explicit recognition and re-balancing of power is needed to level relationships between service users, providers and other stakeholders (Bate and Robert 2006; Donetto et al. 2014; Farr 2017) and ensure power dynamics do not impede collaboration or reinforce existing inequalities (Ní Shé and Harrison 2021). Co-design projects need to promote trust and build relationships between service users, families/carers, clinicians and other stakeholders for their collaborative objective to be realised (Tindall et al. 2021) and participants are well-placed to inform these practices.

To date relatively little attention has focused on the experience of participating in co-design processes and the implications for healthcare improvement projects (Pallesen et al. 2019) although there is evidence of increasing interest in the perspective of participants (Chisholm, Holttum, and Springham 2018; Pallesen et al. 2019) and facilitators (Tindall et al. 2021). These studies have examined co-design’s dialogical processes, principles and methods, and how opportunities and challenges are navigated (Chisholm, Holttum, and Springham 2018; Tindall et al. 2021), enhancing awareness of co-design processes and how to better support co-design relationships and outcomes in healthcare. This research into the experience of a healthcare co-design process may support efforts to create the conditions for knowledge co-creation and collaborative decision making.

This research is part of a larger study that aimed to determine the perceived usefulness of a co-design project for improving mental health service users’ physical health care. The study’s focus arose from earlier research by lived experience and conventional (non-lived experience) University of New South Wales, Sydney-based academics that identified the need for more collaborative approaches between mental health service users and primary care providers to address mental health service users’ physical health inequities. These include higher incidence of physical health conditions, poorer physical health, and higher rates of early death due to preventable physical illness (Firth et al. 2019) constituting a ‘wicked problem’ for which (co-)design might offer alternate solutions (Matthews et al. 2023). The research team comprised academics with experience in primary care, mental health and social policy research, two of whom were lived experience researchers and one a PhD candidate. Three members of the team have worked in mental health services (peer work, allied health) and one is a general practitioner. The research team’s personal and professional experiences motivate them towards healthcare improvements for mental health service users that involve all stakeholders, including ‘experts by experience’ and increase the capacity for mental health service users, primary care providers and mental health staff to work together effectively.

This study (stage one) sought to identify the key elements of the online co-design process, how these contributed to outcomes and how they were experienced by the co-designers (Figure 1). (Stage two will test the co-designed intervention, a Physical Health Conversation Guide, which aims to support interactions about mental health service users’ physical health care.) This article briefly describes the approach to co-design, and the co-design context, participants, structure and activities. It presents findings on participants’ experience of the co-design process and their implications for co-design practice.

Figure 1. Co-design and research stages.

1.1. Terminology

This article recognises diversity in mental health terminology preferences, including how people with lived experience describe themselves individually and collectively, the influence of power in defining experiences, and the importance of inclusivity in relation to identity and language (Christmas and Sweeney 2016). The following terms are used:

• ‘people with lived experience’ (of mental distress/mental illness) which is most preferred by individuals (Lyon and Mortimer Jones, 2020), and

• ‘mental health service user/s’ which is increasingly used as an alternative to ‘mental health consumer’.

Documentation associated with this project also uses ‘people diagnosed with mental illness’ to ensure clarity in the context of medical services without conflating identity with illness (Mental Health Coordinating Council 2022).

Members of the co-design team are referred to collectively as ‘co-designers’ and individually by the identity they brought to the process.

2. Methods

2.1. Design

This research is informed by a constructivist epistemology and critical theoretical perspective and is strongly influenced by a participatory approach. These are consistent with research that seeks to understand human experience in the context of co-design where diverse perspectives, power relations and knowledge co-creation are of particular concern. The qualitative research design allowed for exploration of diverse personal experiences and emergence of unexpected findings (Giacomini 2010, 16). Data sources were individual and group interviews, and co-design documentation. Choice of methods was influenced by practical considerations (e.g. time, resources, COVID-19 limitations), cultural factors (e.g. relationships, group norms, power) and participatory values (e.g. inclusivity) (Vallianatos, Hadziabdic, and Higginbottom 2015, 48).

Three researchers (BA, SW, KT), two of whom are lived experience researchers, designed and facilitated the co-design process and collected and analysed the data. Three other researchers (CS, KF, MH) provided input into the co-design process, study design, data collection and analysis. CS and MH also assisted in co-design sessions. A small lived experience advisory group provided high-level input into the research, one of whom reviewed this article (BB).

Within the constructivist theoretical orientation of this research, involvement of the researchers in the co-design, and the data collection and analysis is not unusual. The researcher is part of the social world they seek to understand and research findings develop through participants’ and researchers’ constructions (Giacomini 2010, 8–9). Anonymous contributions were made possible via an optional online survey in the event any participants felt there was something they couldn’t share in the interview/focus group. The facilitators/researchers were not co-designers. This decision related to the positioning of this co-design project within a larger study which sought to test the co-designed outcome, and which aimed to ensure it was developed by a group of people that represented those most affected by the problem and who would be the primary users of it.

In this research co-design involves collaborative decisions by users and other stakeholders as equal contributors of knowledge. This is distinct from consultation, where users’ (and other stakeholders’) perspectives may be sought, but they are not directly involved in decision-making. Several approaches to co-design in healthcare were considered. McKercher’s co-design foundations, mindsets and methods were chosen for their consistency with trauma-informed, recovery-oriented and social justice principles (McKercher 2020, 5) while Roper and colleagues’ approach, which contextualises co-design within a broader framework of co-production, was chosen for its emphasis on developing consumer leadership and capacity (2018, 2). Both recognise the diversity of mental distress experiences, impacts of treatment and services, and complex social responses experienced by people with lived experience (Daya, Hamilton, and Roper 2020) and may help ensure co-design doesn’t reproduce problematic power relations or other harmful dynamics (Ní Shé and Harrison 2021). Roper and colleagues’ definition of co-design provided a structure for the process (2018, 2) while Palmer and colleagues’ explanatory theoretical model of change for co-design in healthcare (2019) provided a conceptual framework for analysis and application of research findings.

2.2. Sample

The co-designers included:

• service users (4 people with lived experience, one person with lived experience and family/carer experience).

• family/carer (one person with family/carer experience).

• service provider (2 general practitioners, 2 peer workers employed in community organisations; and one representative from the primary health network (PHN).

Recruitment through relevant newsletters sought ‘participants interested in being part of a co-design to improve physical health consultations with mental health consumers using primary care – an opportunity to develop a solution by combining lived and service provider expertise’. Interested individuals received further information from a researcher via telephone, and a consent form via email. Participation was limited to people who lived/worked in the Central and Eastern Sydney Primary Health Network (CESPHN) area where the research was conducted. All research participants provided informed consent. All were paid for their time, unless already participating as part of paid employment.

Co-design workshops were held during November/December 2020. Semi-structured group and individual interviews took place within two weeks following the co-design. All co-designers elected to participate in a group interview (45–60 minutes), or an individual interview (30–45 minutes) held online or by telephone.

• Group interviews (3): Lived experience (3 participants)

  Community Peer worker (2 participants)

General practitioner (2 participants)

• Individual interviews (4): 2 lived experience, 1 family/carer experience

  1 PHN staff

Two further workshops occurred in March and June 2021 in response to co-designers’ feedback.

2.3. Co-design process

The co-design was structured to ‘Define the problem. Identify solutions together. Test solutions’ (Roper, Grey, and Cadogan (2018) (Figure 2) and was conducted online due to COVID-19. Supports for co-designers with minimal experience collaborating online included access to computers and internet, technical and peer support. Co-design activities minimised the need for technology-related skills (Figure 2), and used online whiteboards for recording discussions, displaying decisions, and indicating preferences. Notes from each workshop were circulated to confirm discussions and decisions were captured accurately and provide a written record. The intervention prototype, a Physical Health Conversation Guide designed to support interactions about physical health between mental health consumers, primary care providers and mental health staff, and the method for testing it, were finalised at two subsequent co-design workshops.

Figure 2. Co-design structure and process.

2.4. Research procedure

Co-design documentation was collected and analysed. The co-design workshops were not audio or video recorded due to the potential impact on participation. Co-designers’ experiences were obtained via:

1. group interviews (lived experience-only, general practitioner-only, and peer worker-only) to encourage and expand the perspective of each sub-group (Patton 2015, 477-8).

2. individual interviews (where preferred or if a group interview was not possible e.g. family/carer).

3. an optional brief online survey, emailed within 24 hours of each interview, so additional feedback could be provided anonymously, as the researchers conducting the interviews had been involved in facilitating the co-design.

2.5. Data collection tools

Due to the timing of the ethics application, the interview schedule was developed prior to lived experience researcher recruitment. The lived experience researchers were able to review and alter the interview schedule on joining the project. However, the absence of their involvement from the start was a limitation of this research. The interview schedule comprised a brief script introducing the interview purpose, method of recording, that questions were optional, and that consent could be withdrawn at any time. Questions explored co-designers’ experiences of the co-design process, co-designer perspectives, and decision-making.

2.6. Data analyses

Co-design records and documents, and transcribed audio-recordings of interviews were coded using NVivo 12 (QSR International) and analysed thematically. There were no responses to the survey.

The analysis was conducted over two stages. The first stage used reflexive Thematic Analysis (TA) an iterative process of coding and identifying and defining themes, emphasising time for deep reflection (Braun and Clarke 2020). Iterative Categorization (IC) (Neale 2016), was used to structure the analysis, and provided an audit trail demonstrating the process of arriving at the findings (Neale 2016, 1097).

During this first stage, coding was inductive. Initial independent coding of two transcripts by the lived experience and PhD researchers were compared, and codes refined. The PhD researcher coded the remaining transcripts, guided by the initial coding. After codes were reviewed and agreed, IC provided a systematic process for theming, while applying reflexive TA in the interpretation and analysis. Rigour, known as trustworthiness in qualitative research (Nowell et al. 2017), was ensured through sustained engagement with the data, the IC audit trail, and a review of the analysis by lived experience researchers and supervisors.

The second stage of analysis was framed by Palmer et al’s explanatory theoretical model of change for co-design in healthcare improvement which identifies eight mechanisms of change in co-design (recognition, dialogue, cooperation, accountability, mobilisation, enactment, creativity and attainment), and their relationships to outcomes (Palmer et al. 2019, 5). This facilitated testing the analysis against existing theory, developing conceptual clarity and identifying new understandings this study might offer. Results are presented by theme.

3. Results

The analysis identified three themes: 1. Generating knowledge; 2. Creating space; and 3. Influencing change, which were mediated by time. These are described below.

3.1. Theme 1: generating knowledge

Generating knowledge relates to the practical and relational benefit of making decisions and solving a problem through knowledge generated through diverse perspectives.

Co-designers identified their perspective based on their experience (lived, professional or both) and relationship to services (service user, family/carer, service provider). Lived experience co-designers valued ‘being able to be so open and honest [about their experience]’ and saw their contributions as informed by a broader collective experience.

… when you have a mental health condition and you go to, you know, all the day programs as well as the in-hospital programs … you don’t just learn about yourself, but you learn about other people and what they’ve gone through. So, it’s not just your own perspective that you bring … [Person with Lived Experience, Focus Group]

Service provider co-designers focussed more on the practical benefits of bringing different perspectives and expertise.

… well, you kind of need everyone involved in the health system. You know, everyone involved in this pathway to be there. [General Practitioner, Focus Group]

All co-designers came to a better understanding of others’ experiences, perspectives, and contexts. Realising general practitioners have ‘their own struggles and difficulties and pressures’ and also want change was eye-opening for some lived experience co-designers and fostered a sense of common ground.

I didn’t realise that GPs [general practitioners] actually wanted to change as well. Like, they want and need the service to change too. [Person with Lived Experience, Interview]

Learning from and about each other had relational and practical benefits. Some perceptions were challenged, and new understandings formed. Service providers identified that lived experiences they ‘[hadn’t] ever thought about’ meant they were going to ‘do things a little bit differently’. People with lived experience identified better understanding general practitioners as ‘human’ and managing time constraints and systems issues. These mutual processes of ‘educating each other’ and shifting biases made the generation of new knowledge possible.

I didn’t think you’d ever see a group of, uh, people with lived experiences and GPs in the same room talking about one topic and being on the same page. [Person with Lived Experience, Interview]

I think it was good because it’s kind of like they educated us, and we educated them. And … the theories we put in place … it’s the first kind of step. [Peer Worker, Focus Group]

Multiple perspectives combined to create a holistic understanding of the healthcare experience. For example, people with lived experience explained how presenting at reception and navigating the waiting room impacted the appointment itself, while general practitioners identified structural and systemic impacts on appointments. Peer workers’ perspectives of using services and providing peer support during appointments, offered another angle. The diversity of perspectives was regarded as ‘necessary’ and ‘influential’ by co-designers.

I kind of feel like we were all really necessary … and so that’s what others brought as well … this validity to – to trying to solve a problem from very different angles. [General Practitioner, Focus Group]

The analysis highlighted individual and collective knowledge-generating processes. Individual processes (contributing one’s own perspectives and revising one’s own knowledge) and collective processes (realising common ground, learning from each other, and building shared understandings) were interdependent and mutually enabling. The new knowledge co-created within the group through sharing and dialogue informed collaborative decisions.

3.2. Theme 2: creating space

Co-designing created space for something new to emerge, but this involved discomfort. Co-designers experienced power shifts, uncertainty, exposure to new, sometimes challenging, ideas, and the personal costs of sharing from lived experience. In this context collaborative decision-making required space for developing trust, relationships, equality and listening.

Discomfort was less frequently referred to by lived experience co-designers. At times, the family/carer co-designer felt it ‘wasn’t their place’ to speak up, although they could ‘relate to everything that people with lived experience were saying’. Another lived experience co-designer acknowledged the ‘second guessing’ that ensued.

… my head goes through a thought process afterwards: oh, maybe I said the wrong thing, maybe I – maybe I said too much, maybe I didn’t say enough, maybe I might have upset a few people. [Person with Lived Experience, Focus group]

Service providers’ discomfort related to hearing lived experience co-designers’ ‘negative experiences’, and a desire for ‘moving beyond’ these. One service provider alluded to prior experiences of co-design that had been ‘really tense’.

I was a little bit concerned if, you know, the direction was going to be negative, and it sort of staying there. But … I don’t think it went that [way]. I think it became really productive in the end. [Service provider, Interview]

This co-designer may have been aware that negative experiences of healthcare are common among mental health consumers and was concerned too much time spent on problems and their impact could impede efforts towards solutions.

However, some service providers understood that people ‘need to be heard first’, ‘in a safe environment’, recognising this is part of the process of developing solutions. One also shared their experience of discomfort.

I did find it a little bit uncomfortable to be honest. But I know it’s a part of the process. And I also came in knowing – even though I didn’t have much experience of co-design – I do know that I’m there to hear, hear the patient’s point of view. And sometimes it’s going to be hard to hear. [General Practitioner, Focus Group]

Further, general practitioners recognised that listening was ‘really important from a power perspective’, as they are ‘probably just so used to being in control’ of conversations. People with lived experience appreciated general practitioners’ capacity to engage ‘in a non-hierarchical manner’ and '’being treated as an equal’.

I also really like the fact that we’re all on the same level … it was very nice to have that, to have – have people who were willing to just sit and listen and participate as equals. [Person with lived experience, Interview]

Feeling heard, being comfortable, and even taking a lead created more space for lived expertise.

I felt heard, I felt listened to, I felt acknowledged, I felt accomplished. [Person with Lived Experience, Interview]

… I felt like we were valued. And we kind of led the conversations and discussions rather than the clinicians. Which was, um – yeah, it was a nice change. So, I thought that was good. [Peer Worker, Focus Group]

Peer workers perceived the service-user-to-service-provider ratio as ‘really, really good’ having prior co-design experiences where lived experience was the minority. Co-designers also appreciated the lived experience co-facilitation.

I think what made a difference here is actually having people with lived experience also help moderate it … just really helped level out that process. Like, I – I just found it, you know, less authoritative… it was just an open environment. [Service Provider, Interview]

Relationship building and scene-setting provided a foundation for group cohesion and trust which were important for decision-making. Co-designers appreciated opportunities to get to know each other, identify shared values, acknowledge power and build ‘the shared environment that we want to have’ throughout sessions.

I really liked the fact that we kept going back to the values that we talked about in the very beginning. So, every session we’d, you know, reiterate this is the kind of space, this is – that we want for everybody. [Service Provider, Interview]

Co-designers also highlighted respectful language, ‘not labelling people’ and ice-breaker activities that were reminders ‘that we all have similar interests’. However, one lived experience co-designer thought the time spent building relationships and co-developing principles for working together was unnecessary – ‘we could have done without that hour’.

Processes for sharing ideas and making decisions were perceived to be fair – ‘everyone got a say’, ‘everybody was made to feel like their opinion matters’ and everyone ‘respected each other’s opinions’. However, time limits increased pressure to process information and determine priorities to make decisions.

It was quite difficult to come to conclusions … because there was a lot of information put into that 15 minutes that we had to decipher through and read again and interpret again and to prioritise … [Person with Lived Experience, Focus Group]

To manage time pressures, information was sometimes collated between workshops and brought back (verbatim) to the group, for review. One lived experience co-designer particularly questioned this process, advocating that all work should occur during sessions to ensure transparency.

The analysis revealed co-existing interdependent processes that were transformational (e.g. co-designers’ references to ‘eye opening’, ‘empowering’, ‘non-hierarchical’, ‘uncomfortable’) or stabilising (e.g. co-designers’ references to ‘balance’, ‘shared environment’, ‘structure’, ‘equality’, ‘listening’, ‘transparency’). Experiencing power shifts, differing perspectives and new understandings, while potentially transformative, involved uncertainty and discomfort. The co-design structure, values, and a mutually agreed code for working together created space for transformative work to occur.

3.3. Theme 3: influencing change

This theme encompassed co-designers’ experiencing change and influencing change through co-design. Both small and substantial changes in thinking and practice were evident, occurring within and outside the formal co-design process. A sense of achievement came from seeing results, including unexpected outcomes.

General practitioners implemented changes in practice in response to ideas generated through the co-design as they realised the potential of apparently simple modifications (e.g. improving the waiting room experience). Another service provider identified that existing mechanisms could support many of the solutions proposed. Co-designers were optimistic about what might be possible.

So that’s why this is so good because you were all offering something else [than what is currently offered to service users]. [Person with Family/Carer Experience, Interview]

And I think that we all came away with an understanding of, ‘gee, there are quite a few things that we can do to make this better’. [General Practitioner, Focus Group]

People with lived experience identified changing their attitudes towards general practitioners. They realised their capacity to influence general practitioners’ perceptions and practices and ‘show [general practitioners] how to engage with us a little bit better as well’. All co-designers identified the need for systemic change and that ‘ideally this conversation needs to go up higher’ for change to be realised.

Some co-designers were clear about the co-design outcome, and they clearly articulated this. Other co-designers felt less clear about the outcome and advocated for further refining, identifying ‘the need for something solid’, ‘visual’ and ‘concrete’.

… what’s going to happen now?… what does it look like in a practice? … how would we design this? what would it look like? … we could have gone into a little bit more detail about that. [Service Provider, Interview]

While lived experience co-designers were keen to see results, they were uncertain that outcomes would be implemented in general practices – ‘it’s just a matter of the GPs actually implementing it’, ‘I really hope the decisions made actually get implemented’. However, the actual outcome was not equally important to everyone. Some saw the process itself, the discussions and ideas generated, as valuable for their understanding or practice, regardless.

I don’t think it’s actually important, what we came up with. I think the process, again, and the options, and the broad spectrum of things that we discussed was important. [General Practitioner, Focus Group]

General feedback was that the process had been ‘efficient’ and ‘productive’, that more information was gathered than expected, and a lot was achieved in the three sessions.

The analysis identified interdependent internal processes (experiencing change, being changed) and external processes (influencing change, enacting change). Co-designers experienced change on a personal level and were motivated to influence change at the service level. Despite varied perceptions of the co-design outcome and the likelihood that it would be realised, service providers expressed motivation to implement change independently of the co-design outcome, some having already taken such steps.

3.4. Key mediating element: time

Co-design decisions take time. The need for more time was raised by all co-designers across all three themes. Time was important for generating knowledge in several ways, including sharing experiences, ideas and preferences, getting people’s words right (when documenting contributions), clarifying meaning and negotiating decisions. One co-designer expressed concern about the way ideas were captured and presented back to the group. Perspectives differed about whether this should occur during or between sessions to manage limited time.

Time, within the theme of creating space, was significant for building trust and balancing power to ensure voice and equality in decision-making. Co-designers acknowledged the positive relationships, respect and listening that characterised interactions, and the co-design structure and activities that supported these. These relational aspects included time spent at the start and end of each session to get to know each other, and time spent focusing on group values and creating a safe space for working together.

Time was important in influencing change for focussing discussions, negotiating decisions, and co-creating the intervention and testing process. Co-designers observed that although the co-design was ‘efficient’ and ‘productive’, insufficient time impacted their ability to finalise the outcome (what it looked like, how it would be used) and articulate the changes they were influencing. Two further sessions were held as a result.

4. Discussion

This qualitative research into a healthcare co-design process and the experience of the 11 co-designers clarifies key processes in co-design – generating knowledge, creating space, and influencing change – that have implications for collaborative decision-making (Figure 3). The findings advance existing knowledge about co-design’s collaborative processes and how they support co-design outcomes by identifying interdependent tensions operating in a dynamic equilibrium to facilitate each process. Time is a mediating element across all processes, required to construct meaning, build relationships, and negotiate action. As co-design is increasingly preferred over consultation for improving and innovating in mental health, it is important that co-design processes uphold collaborative decision-making, a key element of co-design (Arnstein 1969; Daya 2016).

Figure 3. Co-design processes that manage interdependent tensions over time.

The dynamics of co-design may be characterised by intensity and uncertainty due to diverse perspectives and co-design’s emergent and generative nature (Iedema et al. 2010, 84) and power differentials, inevitably present in collaborations between service users and providers (Farr 2017; Rose and Kalathil 2019)., These dynamics are key transformative elements, opening up new ways of seeing each other and healthcare challenges, generating new understandings and alternative solutions. However, they also present challenges for co-designers and facilitators alike (Crompton 2019). In this study, stabilising elements such as small group size, lived experience facilitation, session structure and relationship-building, provided interpersonal and structural support. These transformative and stabilising elements interacted, creating a space that was simultaneously supportive and generative.

Generating knowledge involved interdependent individual and collective elements that contributed to the development of shared understandings and new meanings. Individual processes involved contributing one’s knowledge and experience to the co-design and revising one’s own perspective in response to others’ contributions. Collective processes included realising common ground, learning from each other, and building shared understandings. Co-creating knowledge requires respectful dialogue, navigating differences, and working through disagreement (Palmer et al. 2019), also necessary for collaborative decision-making.

Similarly, the process of influencing change was characterised by interdependent internal processes (being changed oneself) and external processes (affecting change through the co-design outcome and in other ways) which appear to be mutually facilitative. The co-design outcome was of significance to the co-designers, albeit to varying degrees, as was the co-design process, and how outcomes were produced. This included processes for identifying problems, developing solutions, and making decisions together.

Time is a critical resource for engaging and supporting co-design processes but presents particular challenges. System imperatives often compete with the time needed to ensure inclusion, address power imbalances and support dialogue (Ní Shé and Harrison 2021) potentially compromising important co-design processes. In this study the group had different perspectives about how best to manage time, such as whether and how to refine work between sessions. In co-design, managing these decisions is a negotiated process, which also needs time. Such negotiations are necessary for transparency and the development of trust (Iedema et al. 2010, 86).

There are contextual considerations for co-designing practices and services in healthcare and similar fields. Unlike products designed for individuals, health and other public services are ‘enacted by all stakeholders involved’ (Akoglu and Dankl 2021, 309). Approaches that build empathy and enable mutual learning are essential (Akoglu and Dankl 2021, 310). The context of this co-design, primary care and mental health in Australia, in the first year of the COVID-19 pandemic, required the adaptation of design approaches to maximise equal participation in a digital space. We started with simple, familiar activities, to generate understanding of each other’s ‘lifeworlds’ (Matthews et al. 2023, 185), and built on these as the co-design team became more comfortable with each other and the technology.

In co-design, stakeholders’ diverse and complementary perspectives come together to create knowledge and make decisions to influence change. Knowledge co-creation and collaborative decision-making processes distinguish co-design from consultation, so it is important to support these processes in co-design contexts, to promote collaboration (Akoglu and Dankl 2021), and prevent unintended adverse consequences of inadequate co-design (Ní Shé and Harrison 2021). Better understanding co-design from the perspective of co-design participants can inform and improve co-design processes, ensuring the benefits of co-design are realised.

This research complements other findings into co-design processes in healthcare. Research into co-design roles and processes has identified the importance of developing relationships and trust and attending to power imbalances to promote shared decision-making (Tindall et al. 2021), mutual understanding of the problem, values alignment, and attention to power and potential conflicts (Chisholm, Holttum, and Springham 2018). This study reveals mechanisms that underlie these processes, and which may prove valuable when considering how these co-design processes might best be facilitated.

4.1. Limitations and future directions

The co-design was conducted online due to COVID-19. This was a new way of collaborating for most of the group, and two lived experience co-designers had never used online videoconferencing. Supports were provided to minimise barriers to participation for those new to the technology, and activities increased in complexity as participants developed their technological skills. Further research into online co-design and the impact on participation is recommended.

The lived experience researchers, recruited after ethics approval, did not contribute to initial development of the interview schedule, although they did have the opportunity to amend it. Collaboration between lived experience and conventional researchers at the earliest phase of project development is best practice and future projects should ensure processes and resources are able to support this.

Funding limitations meant this co-design project did not involve designers. Designers known for their contributions to co-design in healthcare were paid to mentor the PhD candidate. Future similar projects would benefit from involvement of design professionals.

An anonymous survey provided after group or individual interviews was not taken up. It is unclear whether participants did not use the survey because they did not feel anonymity was possible, or they did not feel it was needed. Honest feedback in the spirit of learning together was encouraged at the group and individual interviews.

5. Conclusion

Co-design is a complex interpersonal process increasingly used to improve and innovate in healthcare. Unlike consultation, where diverse stakeholder perspectives are gathered but not necessarily adopted, the co-design team generates knowledge and makes decisions together. This requires space for developing relations, creating meaning and shifting power, especially in healthcare where diverse experiences and power differentials are common. This research identified underlying dual processes that interact to regulate and facilitate co-design processes and may work to support the conditions for equitable relations, knowledge co-creation and collaborative decisions in co-design teams. Understanding how co-design projects are realised and experienced, and the role of time in mediating these processes, will help to achieve the benefits of co-design, and their capacity to influence change, in healthcare and related areas.

Authorship statement

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.

Ethics

The study was approved by the University of New South Wales (UNSW) Human Research Ethics Committee (HREC) (HC200470) on 14 August 2020.

Participant consent for making data available

Ethics approval for this research did not include provision for making research data publicly available to ensure participant anonymity.

Participant consent for publication

Study participants provided informed consent for publication of their deidentified data in the reporting of this research.

Acknowledgements

The authors would like to thank everyone who collaborated in the co-design process and contributed to this research, and Central and Eastern Sydney Primary Health Network for their partnership in this project. The authors would also like to thank Brett Bellingham for their comments on an earlier draft of this paper.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This research is supported by a PhD Scientia Australian Government Research Training Program (RTP) Scholarship, funding from the Centre for Primary Health Care and Equity UNSW, Sydney and Raising the Bar, funded through the Mental Health Commission of NSW Lived Experience Framework Grants.