Background

A small portion of the population have disproportionately high levels of healthcare use and expenditure [1], termed high health service utilisation (HSU). This pattern is evident in health systems worldwide [2]. People who experience HSU are heterogenous in terms of demographic characteristics, and their mostly complex physical, medical, psychosocial, and spiritual care needs [3, 4]. Factors identified as contributing to HSU include unmet psychosocial needs, low socioeconomic status, limited access to primary and preventative health care, and distrust in the healthcare system [3, 5,6,7]. HSU detracts from optimal health system performance with overuse of valuable resources and is associated with poor health outcomes [8, 9]. However, the effectiveness of interventions to reduce HSU is limited [2, 10,11,12,13]. One reason for this may be failure to target and tailor interventions to the highly variable needs of people with HSU [2]. Thus, when (re)designing interventions for these people it is imperative to incorporate the diverse perspectives of end-users to ensure interventions are acceptable, feasible, and sustainable [5, 14].

Co-design is a methodological approach well suited to achieving this aim. The terms co-design and participatory design are often used interchangeably, however, while there are similarities there are important differences [15]. Co-design is a process of “bringing consumers, carers, families, and health workers together to improve services. It creates an equal and reciprocal relationship between all stakeholders, enabling them to design and deliver services in partnership with each other” [14]. Whereas, in participatory design end-users are involved as advisors only during the design process, and do not co-lead service (re)design, implementation, or evaluation [15, 16]. Co-design is increasingly popular in healthcare quality improvement and service (re)design [17, 18], however the ambiguous, broad nature of co-design has led to a multitude of definitions, variance in meaningful engagement, and use of ‘co- ‘ terminology in the absence of involvement of people with lived experience [15, 16, 19,20,21]. Examining the experiences of co-design participants is essential to understand if the co-design process embodies the desired principles of equal partnership, openness, respect, empathy and design together [14]. Despite this, few studies have formally evaluated participants experience of active involvement in the co-design of new services [8, 9], in primary care [8] or outside the United Kingdom and North America [22, 23].

To address these evidence gaps, we undertook the co-design of a community-based model of care to address the needs of people with HSU, in the form of frequent hospital admissions at a regional public hospital in Tasmania. This evaluation aimed to explore the experiences and perceptions of people involved in the co-design process.

Methods

This is a qualitative study exploring the experiences and perceptions of healthcare professionals, policy makers, administrators and consumer representatives who participated in the co-design of Healthcare Connect North. The study methodology used components of grounded theory as described by Chun Tie et al. [24] and qualitative methodological rigor as described by Tobin and Begley [25]. Grounded theory was chosen to guide the research as we wanted to use open ended interview questions where participants were at the centre of that question. We also wanted to let the data speak for itself rather than impose ideas on how to approach the data [24]. In grounded theory data is iteratively generated so findings are ‘grounded’ in the data rather than researchers imposing a fixed idea or past experience on the data [24, 26]. Grounded theory is systematic, yet dynamic and iterative and provides a rigorous framework for information gathering, coding, and analysis, which is both inductive (bottom-up) and deductive (top-down) [24, 26]. Deductive and inductive thinking can both be used in the 'constant comparative analysis' phase of grounded theory, which is a cyclic iterative process in which codes and themes are compared, collapsed, and new data and codes are compared with existing codes and themes [24]. Qualitative study procedures were guided by the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines [27] (Supplement 1).

The study received ethical approval from the Human Research Ethics Committee of the University of Tasmania, Australia (H0026675). The all-female investigator team comprised of two registered nurses (DM, CM), one of whom is a PhD candidate. One sociologist (EH) with expertise in qualitative research, and two general practitioners (GPs) (TW, KS) with expertise in public and primary health, one of whom was the principal investigator with a specific interest in chronic disease management.

Setting and participants

In Australia, the federal government funds non-government, not-for-profit organisations called Primary Health Networks to co-ordinate and commission primary healthcare services for their communities [28]. There are 31 Primary Health Networks in total [29]. These work in partnership with stakeholders, providers and service users to deliver outcomes based on person- and community-centred needs assessment, prioritisation, procurement, monitoring and evaluation [30]. Healthcare Connect North is one such service which was developed and implemented by the Tasmanian Primary Health Network, Primary Health Tasmania with funding from the Australian Federal Government. Primary Health Tasmania chose to use co-design because in the context of commissioning, co-design enables person-centred, locally adapted approaches that are accessible, efficient, effective and comprehensive [31]. The co-design was undertaken with a governance structure comprising of a Steering Group, Advisory Group and Working Group (Table 1). Co-design participants included healthcare consumers, healthcare professionals (GPs, registered nurses, allied health professionals) and staff in health services management and leadership roles. They came from Primary Health Tasmania, the Tasmanian Department of Health, the Tasmanian Health Service, the University of Tasmania, private practice and Health Consumers Tasmania. The co-design process consisted of online meetings of Steering, Advisory or Working Groups, out of session communication (email and one-on-one meetings) and two workshops which included case studies and small group activities (March and April 2021). Co-design occurred during the COVID-19 pandemic which affected the timing and types of co-design activities that were undertaken. At the time of this study, Healthcare Connect North was in the early stages of implementation.

Table 1 Governance of healthcare connect north co-designa
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People from any of the three governance groups involved in the co-design process who attended one or more meetings or workshops were invited to participate in the study (n = 26). Two GPs who were co-design participants but also investigators in this study were excluded. Participants were recruited via an email invitation sent on behalf of the research team by a Primary Health Tasmania delegate. Participants that did not respond to the email within two weeks were sent a follow up email and/or a phone call. Those who elected to take part in the study were sent participant information and consent forms.

Data collection and analysis

Components of grounded theory used were constant comparative analysis, memoing, data collection, coding (initial and intermediate), theoretical sampling and theoretical sensitivity [24]. An open-ended interview guide (Supplement 2) was developed to explore key areas of the co-design process. As is common in qualitative research and essential to grounded theory, the interview guide was iterative, flexible, and adapted as data collection progressed to follow data leads and reflect emerging themes or responses from interviewees [24]. The first author (DM) undertook the semi-structured interviews. Participants were interviewed once either in person or online according to their preference. Interviews were recorded (audio-visual or audio), transcribed verbatim with embedded transcription functionswithin MS TEAMS, Zoom or MS Word, and checked for accuracy. Participants received a copy of their transcribed interview and were able to clarify, change or delete any comments. Journal entries were taken after each interview and when reflecting on the data, documenting the interviewer’s evolving thoughts, interview adaptions, potential biases, and emerging themes.

Transcripts and journal entries were analysed using NVivo Release 1.5.1 (940). Two investigators (DM, CM) iteratively read and coded transcripts, initially independently and then meeting regularly to discuss code names and themes with the aim of understanding different perspectives and gaining consensus. The full investigator team met at regular intervals to refine the analysis. A thorough audit trail was maintained to trace the comparison of data, themes, and relationships. Data that reflected more than one code were coded multiple times. Data saturation was assessed as achieved when no new codes or themes were identified from interviews.

Results

Thirteen co-design participants, two of which were healthcare consumer representatives, were interviewed from June to September 2022 (Table 2). Reasons for non-participation were too busy (n = 4), no reason provided (n = 8) or unable to contact (n = 1). Interviews were conducted via MS TEAMS (n = 10), Zoom (n = 2), or telephone (n = 1), in participants’ workplaces (n = 10) or home (n = 3). Interviews lasted on average 28-min (range 15 to 51-min).

Table 2 Characteristics of study participants (n = 13)
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Codes were condensed into six themes and six sub-themes (Table 3). Participants comments relevant to these are italicised below, and further examples are presented in Table 4. Codes are presented in bold when mentioned in the text below.

Table 3 Themes, sub-themes and codes
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Table 4 Example quotes from interviews
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Bureaucracy hinders co-design

Most participants described some level of bureaucracy hindering co-design, such as frustration at the pace of change in large bureaucratic organisations, or hoops they had to jump through during the co-design process (Table 4).

“…the processes actually just move so slowly…the checks and balances just get in the way sometimes…there has to be a legal opinion…an accounting opinion and their structures just don’t promote innovation.” P1

The co-design governance structure was described as “a fairly bureaucratic thing” [P12]. Three participants described “back-channelling” [P10] as conversations or decisions occurring outside the co-design team. There was some confusion and dissatisfaction around how decisions were made (Table 4). Participants reported decisions were made by the core team, Steering Group or when the right person with decision making power was in the virtual room.

“The decisions I think were made by the core team. And I can only say that because we provided ingredients, and they came back with the cake. And I can’t even remember even where there’s an opportunity to sort of ask whether if it’s gluten free or had anything particularly in it. It was sort of, here’s a solution, or here’s what we’ve come up with.” P12

Importance of lived experience and diversity

Perspectives of people with lived experience are essential

Most participants described personal or family experience of chronic disease, however professional participants described wearing their “professional hat” [P13] during the co-design process. Participants felt consumers were valuable, describing them as “fantastic”, “wise” [P4], and open to novel service delivery (Table 4). Most participants felt consumer involvement was “underdone” [P13] and expressed concern that consumer representation was not as representative of people with HSU as it could have been.

“I feel like it's a reflection of where we're at with the system, where it's not as comprehensive as it could be…I feel like at times we're not sure how to do it…don't get me wrong it's fantastic to have consumers as members of Advisory Groups, but it feels at times a bit one-dimensional.” P3

Three participants described how to work better with consumers in the future. They spoke about barriers of involving people with HSU, such as access to people with HSU, incentives, and health sector willingness to engage in consumer involvement.

“…we're still really learning about how to have consumers at the table as partners in planning and implementing and evaluating services.” P3

Others suggested using different mechanisms in the future to enable consumer involvement, such as kitchen table conversations, induction, and parallel reference groups (Table 4).

Importance of diversity

Many participants reported the value of hearing others’ perspectives and felt there was an adequately diverse mix of stakeholders and health professionals (Table 4). Diversity was most often described in terms of professional representation, but not in terms of other type of diversity (Table 4).

“There's certainly diversity of background and skill set...outside white Anglo-Saxon males and females, there's probably not a great deal of cultural diversity there...” P7

Participants noted lack of diversity, such as First Nations representation or people with mental health diagnosis (Table 4). Some participants felt the lack of diversity meant there were prescriptive ideas of models of care, or the service wouldn’t “…hit the mark for the needs of the population” [P5].

“I think…there were a fair amount of assumptions made about and perhaps stereotyping of the people that we’re designing the service for.” P12

Importance of a common purpose

Most participants described a common purpose as a need for change and wanting to do things differently by bringing all sectors of the health system together to improve the experiences of people with HSU (Table 4).

“I think we have got to a stage…in primary healthcare, where we can’t afford to not do something differently…I think everyone's seeing that…we're all one health system.” P1

Participants considered workshops and case studies as instrumental in developing a person-centred common purpose.

“We also had this opportunity of having a look at this de-identified data of a real person over a 12-month period…it really brought to bear that we were really talking about and trying to better somebody’s life.” P6

Funding was viewed as a significant enabler for co-design. However, not all participants perceived innovation, describing the service as "putting old wine in new bottles” [P4] (Table 4). Most people felt they made a personal contribution (Table 4).

Relationships are integral

Relationships in co-design

Participants viewed the building blocks of relationships such as trust, understanding and communication as integral to the success of co-design (Table 4). The co-design process was described by some participants as not just about current relationships, but about building partnerships and creating new or strengthening existing relationships.

“What we try to do is build partnership…rather than saying ‘oh, we’re so different, we can’t work together’. We say, ‘we’re so different, isn’t that fantastic’. We can do stuff that you find too difficult, and you can get us to do stuff that you’re not able to do...” P7

Participants spoke about the benefits and challenges of collaboration.

"...who's paying for what and who's doing this and who's doing that…there seemed to be a bit of confusion around that, and it held up the project quite a lot.” P11

Challenges to relationships

The challenge of staff turnover was raised by several participants. This had potential to put the program at risk if the co-design was not a priority for the new staff member(s), or new staff wanted to re-visit previously made decisions (Table 4).

“I think the challenge has been there’s been quite a bit of turnover…it’s just that you get that really good traction and then the person changes and you sort of feel a little bit at the whim of that person, whether that’s still a priority or whether things have changed” P3

Several participants spoke about different agendas people or sectors brought with them and understanding each other’s priorities (Table 4). The co-design team was described as “grown up and polite” [P4], there were only three examples of conflict raised in the interviews (Table 4). Several communication challenges were noted, such as intermittent communication, professional jargon, and acronyms.

“…any other healthcare rep…would have had that difficulty in understanding the jargon, the process, the language and that sort of way in which people were talking to each other.” P12

Participants expectations inform their co-design experience

Expectations

Many participants had previous experience of co-design or service (re)design, described different emotions and a personal belief or motivation for participating in the co-design process (Table 4).

“That's one thing I'm really keen to see…how do we demonstrate how we’ve made best use of all parts of the system.” P3

Most participants described an expectation of working together from the start to design a person-centred community service. However, some participants described that they were “never really quite sure what role was expected of [them]” [P13] and some felt their inclusion in the co-design was tokenistic.

“I sort of felt personally that you didn’t have a lot of agency in the process…it felt you’re just sort of there as a token figurehead.” P10

Pace of change

All participants spoke about the slow pace of change, how long the process took and how this affected momentum and their engagement over time (Table 4).

“…a lot of enthusiasm to start with, a lot of enthusiasm at the moment, and I thought the process had died in the middle.” P1

Five participants spoke about the impacts the COVID-19 pandemic had on the co-design process, such as maintaining momentum, juggling involvement with managing the pandemic response, and interacting online (Table 4).

“…unfortunately, probably because of COVID, I was unable to give the level of engagement that probably would have been ideal…” P13

Learning from co-design

Most, but not all participants felt they had learnt during co-design.

” I learnt a lot of things…from the data…it reinforced the social problems that people have that sometimes impact on their health care...I got to see a different side of the health system…how some of the different areas work and how they interact.” P8

Participants spoke about the need to evaluate the co-design process to inform future co-design initiatives. However, Government funding was perceived by one participant as a challenge to program evaluation (Table 4).

Discussion

This study sought to explore the experiences and perspectives of people participating in the co-design of a community-based health service and contributes to the limited knowledge of the experiences and perspectives of co-design participants. Most participants reported positive aspects of their experiences such as having a common purpose, valuing relationships, and having a personal motivation for participating in co-design. However, they also identified areas that could potentially be improved. Bureaucracy, both internal and external to co-design was perceived to impact co-design. Participants valued the perspectives of consumers, however felt the perspectives of people with lived experience of HSU was missing. Participants felt that diversity in co-design team membership was important as it enabled participants to listen and understand diverse perspectives but described this co-design team as diverse in professional background only. Future co-design projects could use these findings to improve co-design experience for participants, and ultimately the outcome for communities.

Bureaucracy, either external to, or within the co-design process was described by many participants. Similar to other research [32, 33] participants described bureaucratic processes, such as checks and balances or calling on relationships to unblock stalled processes. Participants felt these bureaucratic structures could enable or hinder co-design and were inevitable in co-design across health sectors and with Government. This is consistent with previous co-design research [32, 33], which suggests implementing co-design methodologies into bureaucratic organisations poses challenges, as the culture and structure of bureaucratic organisations and co-design are completely different [33]. One participant described this co-design process as “a fairly bureaucratic thing” which may be the result of loss of “democracy” when moving co-design online during the COVID-19 pandemic. This highlights the potential need for blended delivery models of co-design which is fit for the post COVID-19 era [34, 35]. Participants described confusion over how decisions were made, such as needing to have the right decision-maker(s) in the room or decisions were made by the “core team”. Our findings suggest decisions were reliant on key individual(s) within organisations, which runs counter to co-design principles of design together and equal partnership [14]. This is consistent with other research, which suggests the locus of control or ultimate decision-making power often lies outside the control of co-design team members [16, 32] and risks the design process being participatory design rather than true co-design [15, 16]. This suggests co-design principles may not be able to be fully adopted in bureaucratic organisations, although research into how bureaucratic structures hinder and/or enable co-design is sparse [32]. As it is difficult to avoid bureaucracy when co-designing in healthcare or with Government, we recommend research to identify if co-design principles can be fully adopted in these structures and to understand how co-design teams navigate these complex environments [20, 32, 33].

Perspectives of people with lived experience of the issue at the heart of a healthcare service are essential in co-design, as their involvement can have powerful impacts on culture and shared understanding [14, 19, 36]. Participants used words such as “wise” and “fantastic” to describe consumer involvement and gave them (participants) an understanding of how people are cared for in the healthcare system. This is consistent with other research which found co-design participants became accountable to consumers, reduced conflict, and bought the human element to service (re)design [32, 33]. Yet, most participants in this study felt consumer involvement was “underdone”, “one dimensional” and not as representative of people with HSU as it could have been. This has been found in other co-design research which suggests perspectives of people with lived experience can be missing [37,38,39] and level of involvement can vary [19,20,21]. Consideration and communication of co-design definition, principles and methods is essential to ensure people with lived experience are not advisors, but co-lead design [19,20,21]. Failure to do so may unintentionally disenfranchise people with lived experience [38]. Several participants spoke about the challenges of involving people with HSU in co-design, such as recruitment and engagement, which is a finding consistent across co-design research [23, 36,37,38, 40,41,42]. Participants suggested better ways to support consumers, such as financial and practical support, kitchen table conversations, and parallel reference groups. Others have recommended careful preparatory planning of co-design, personal development support, flexible involvement, and relationship building that supports long term involvement could help ameliorate the problem of lack of consumer involvement [23, 36, 40, 41]. Participants desired diverse encounters that deepen their understanding of what it is like to experience HSU, and ultimately improve service design. Thus, co-design mechanisms and resources should support consumer involvement that is diverse, flexible, and deepens understanding [36, 38, 40, 41].

Diversity in co-design team membership is essential [43], however people who are hard to reach or from disadvantaged groups are often overlooked [37, 40]. Participants felt that diversity in co-design team membership was important as it enabled participants to listen and understand diverse perspectives and expertise. Participants reported that membership of this co-design team was diverse in terms of healthcare background yet identified an absence of people that are hard to reach or disadvantaged. Several participants described the team as comprising of Anglo-Saxon, professional, and two gendered (male and female). This runs counter to research which suggests diversity is essential if co-design outcomes are to be innovative [43], as different perspectives promote understanding and different ways of thinking [40, 44]. This finding suggests that diversity of professional backgrounds can take precedence over other types of diversity. We suggest those assembling co-design teams are purposive in their recruitment to ensure representation of diverse views, knowledge sources, and demographics, which is in line with findings which stress the importance of careful preparation of team membership [40, 43]. Following purposive recruitment, we recommend those reporting co-design outcomes should include descriptions of co-design team members to permit clear identification of diversity or lack thereof, as there is often inadequate reporting of co-design to enable this [17, 36, 44,45,46]. Additionally hard to reach or disadvantaged communities require co-design methodologies which align with their culture and values, such as co-design with First Nations Australians [47], people with severe mental health [48], or culturally and linguistically diverse communities [39]. Diverse co-design teams have been shown to overcome barriers to co-design involvement, such as discrimination, culture, complex multimorbidity and socioeconomic factors [36, 37, 40]. Perspectives of diverse participants are essential in service (re)design if health services are to be culturally safe and inclusive [36, 37, 39].

Relationships [42, 44, 49], learning [42, 44, 50], co-design purpose [8, 44], and managing expectations [23, 42, 44, 51] are essential for co-design success and these themes emerged in this study. Participants used words such as “trust” and “understanding” to describe relationships with co-design team members, which is similar with co-design research that found positive relationships help foster positive co-design environments [44, 49]. Conversely, “professional jargon” as described by one participant can impede understanding and participation [8]. Learning about “different sides of the health system” were described in interviews and has been reported in other co-design research as enabling co-design teams to deepen their understanding of different perspectives to move beyond existing boundaries [42, 44, 50]. Participants described a common purpose, yet some were unsure why they were invited to participate in this co-design or had role ambiguity. These finding contrast with co-design research which found managing expectations and role clarity were important for maintaining co-design engagement [8, 23, 44]. The slowness of co-design was raised by participants in interviews and has been highlighted in other co-design research as a barrier to co-design [42, 44, 50], yet essential for relationship and shared leadership development [44]. Some participants felt the COVID-19 pandemic impacted co-design momentum, their involvement and added an extra layer of complexity to an already complex environment. Most participants described previous (co-)design experience and subsequent expectations of what this co-design would involve. Since there are a plethora of co-design approaches with varying degrees of involvement [19, 20, 51], these findings suggest co-design organisers should describe co-design definition, principles, toolkits used and expectations to guide participants. Yet previous co-design research suggests co-design definitions and principles are often under-reported and overlooked [20, 21, 41].

This study has some limitations. There was a 50% response rate, therefore the views of non-participants may have been different. However, the backgrounds and experiences of all potential participants were represented in the sample population and all co-design governance structures were represented (Table 2). Because this was a small sample of known individuals, for ethical reasons we were unable to report characteristics of participants to whom quotes were attributed and we may not have been able to detect small differences in perceptions between subgroups, such as healthcare professionals compared to consumers. Participants who had a positive co-design experience may have been more likely to participate in this study. However, participants voiced a variety of views and experiences both positive and negative. Lastly, data collection occurred during the implementation phase of the Healthcare Connect North service, approximately 18-months into the co-design process. This could have led to some participant recall bias and participants may not recall their experiences correctly or their experience may have dulled over time.

Conclusion

This study sought to explore the experiences and perspectives of people participating in the co-design of a community-based health service and contributes to the limited knowledge of the experiences and perspectives of co-design participants. While most participants reported positive aspects of their experience, they also perceived that there were factors which hindered the co-design process and others that could be improved, such as bureaucracy, greater diversity, and involvement of people with lived experience. Future co-design projects could use these findings to improve the co-design experience for participants, and ultimately the outcome for communities.