Table 4 Example quotes from interviews

Bureaucracy hinders co-design

Bureaucracy

“…the processes actually just move so slowly…the checks and balances just get in the way sometimes, as far as it has to go up a pathway, there has to be a legal opinion, there has to be an accounting opinion and their structures just don’t promote innovation.” Participant 1

“To start off with everyone was really, really motivated. Everyone was really, really positive. Everyone was really keen to get it up and running. And then everything went quiet … and then bureaucracy took over.” Participant 2

“you’re dealing with big systems with very, very insular and entrenched processes. I mean dealing with [name of department]. Oh my God, that is just frustration personified. [Department] is so so slow to do anything… it’s just such a slow and antiquated process, but that’s what big systems are. They are that, they are their stable points. So unfortunately, you’ve just gotta bite your tongue and just grind through.” Participant 7

Back channelling

“I think there were lots of discussions that happened outside of the group, sort of back channellings…A lot of backchanneling and a agreeing this is what it’s gonna be like, you know, this is what the service is gonna look like.” Participant 10

“Having more informal communication about things that I could potentially have helped with.” Participant 5

Decision making

“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.” Participant 12

“…sometimes I feel like it was tricky to get decisions until you got that CEO, PHN to CEO to Secretary…but then to get some of those things really actioned has required getting just a couple of key decision makers in the room who had that authority to go ‘Yes, we will do it.” Participant 3

“I did get the sense that there is a little bit of a preordained sort of approach to the workshop. That this had all been thought through already and we were sort of…being pushed down a pathway that had been sort of preordained…We’re not really designing the service or anything. It’s almost having a group of people in the room to validate the preordained process is the sense that I got.” Participant 10

“Decisions were generally, we would, as a project team we would propose and then people would discuss and request changes if they wanted changes. And then we would check in, do we agree? That would be how it was done.” Participant 2

Importance of consumers and diversity

Perspectives of people with lived experience are essential

Consumers are valuable

“There was some fantastic consumer input, I always enjoy that because they really get up, you know, they’re wise.” Participant 4

“Like…[GPs] have our perspective, your consumers have their perspective and they often, well it's always wise and good to listen to that perspective. So, I thought the consumers did a great job at coming up with ideas and saying this will work, that won’t work, have you thought of this. It was great.” Participant 4

“I think at one stage we had three or four different consumer reps and it was, it was wonderful to see that, you know, we weren't all sort of looking at the same thing. You know one would be talking about one part of the pie and then the other would be, you know, talking about their experiences and that would…be a different type of the cut up of pie of sorts and, so yeah, we weren't just sort of talking about the one thing.” Participant 6

“I think there is certainly a greater level of awareness and understanding from the consumer perspective and I think community and consumers are much…better prepared to accept different models of care now than they were say, 10 years ago. In fact, I think they are well ahead of where the provider community is.” Participant 7

Consumer input underdone

"I feel like at times we're not sure how to do it [involve consumers] and so therefore we don't or we're just relying on you know, and don't get me wrong it's fantastic to have consumers as members of Advisory Groups…but it feels a bit at times, a bit one-dimensional.” Participant 3

“I think…there were a fair amount of assumptions made about and perhaps stereotyping of the people that we’re designing the service for.” Participant 12

“…it's a shame that we didn't actually get to more real consumers to be able to determine how the design might be better.” Participant 2

"The only area that maybe might have been a little bit underdone was that of community engagement and engagement with people who are suffering from chronic disease and what their experiences were and what they thought might be better to try and improve them.” Participant 13

“I don't know that we talked about lived experience much at all. I think it was more, it was focused on experiences with our services and service delivery and our clients.” Participant 11

“I don't think the model was road tested with consumers…ask them and talk to them and go through the process to see if it would work with them.” Participant 12

Consumer were not representative of people with HSU

“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 and so therefore we don't or we're just relying on you know, and don't get me wrong it's a fantastic to have consumers as members of Advisory Groups and, but it feels a bit at times a bit one-dimensional.” Participant 3

“I wouldn't say these consumers were poorly health literate, they were a bit more literate than the average probably.” Participant 4

“I mean high-flyers [people with HSU] aren't going to put their hand up and go pick me. That's just not the nature of the people I think” Participant 12

We need to work better with consumers

“…we're still really learning about how to have consumers at the table as partners in planning and implementing and evaluating services. I think you know, we're making good steps, but you know it's not where it needs to be yet.” Participant 3

“…kitchen table sort of methodology, which is really just a focus group in an informal setting. And I think that would have been useful, and that's probably the best way to reach those, some of those consumers…I think having a parallel group you probably need more than one… so really like sounding boards or discussion groups where you can fly ideas with them to see how things might work … and then take that back to the group and unpack that about how the hospital and how the system deals with those issues that they raise.” Participant 12

“…focus groups or other mechanisms, I think would add value and we need we need to work out how we do it better.” Participant 3

“…induction and support…for health consumers” Participant 12

Importance of diversity

Hearing others’ experiences

“I think you get a better understanding of how people get cared for outside of the system you work in” Participant 1

“…it's always interesting just to hear different perspective of the GP's and you know the different stakeholders in their management and interaction with client groups.” Participant 11

“I think it just made people sort of go, ‘Oh yeah’ and that was, you know, I think that was the point. Oh yeah, it's not quite like that, or yes, I was making assumptions.” Participant 12

Diversity

“The different groups who were there…they also know different parts of the health system really well. And I think that helped to dissect some of the issues and pinpoint some of the problems that needed, big problems, that needed to be sorted out.” Participant 12

Lack of diversity

“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…” Participant 7

“Aboriginal and Torres Strait Islander, I can’t speak for them at all and I don't think we had anyone who's representing that group.” Participant 4

“I don't remember there being any sort of cultural diversity there of Indigenous, even gender [diversity] it wasn't really there at all.” Participant 1

“I think it was diverse amongst those people that actually were stakeholders in this process” Participant 1

“I call them the usual suspects and they're the people I see at all the committees” Participant 12

“I think…there were a fair amount of assumptions made about and perhaps stereotyping of the people that we’re designing the service for.” Participant 12

Importance of a common purpose

Need for change and wanting to do things differently

“I think sustainability has been at the forefront of this one… I think that has meant people have thought more about sustainable patient focused care. And that's, I think for me that seems to be the thing that's had the greatest, hopefully the greatest impact on the outcome.” Participant 12

"putting old wine in new bottles” Participant 4

“…the actual co-design happened with the project team. Not back with us. So, we didn't, there wasn't this sort of ongoing cyclical relationship or iterative relationship with us in the co-design process. It was here, have your input and we'll go off and do something, then they came back with here’s the result. So, it’s, it had flavour of co-design about it, that's probably the best way to say it.” Participant 12

Person centred

“And then we also had this opportunity of having a look at this de-identified data of a real person over a 12-month period and how many times they’ve been into the hospital and what their symptoms were and those sorts of things. And it really brought to bear that we, we were really talking about and trying to better somebody’s life. Whereas a lot of the time you do all of these governance documents or policy documents, and they're very high level and incredibly important, but an individual isn’t seen in those documents.” Participant 6

“…it's not a particularly sexy area. Do you know what I mean?…Like in hospitals, and some specialists that’s sexy, normally the surgeons and you know, the high fly dynamic one with Porsches and they cut people, so they're really important. Yeah, this group of people doesn't use that type of service. They're the non-sexy blocking up the wards type people and it's just nice that there's a bit of commitment and want to improve their journey, and we hope it will improve the experience for staff as well.” Participant 2

Funding

“Literally, it's saying we've got $2,000,000. You can take it or leave it and we've got the resourcing that we want to apply for that…purpose…” Participant 7

Innovation in primary healthcare

“I think we have got to a stage… in primary healthcare, where we can’t afford to not do something differently, we really got to that critical point and I think everyone's seeing that…we're all one health system and that, if you, if you don't actually engage with primary care and provide some different systems, then you can't solve the problems with emergency departments and beds.” Participant 1

“…very little opportunity for innovation in community care” Participant 9

“No, I didn't notice any different ways of working….the same group of people interacting in the same way, doing the same things. I didn't see anything different there.” Participant 12

Personal contributions

“I think what I've bought is trying to remain focused on the difference we're trying to make” Participant 3

“Blood, sweat and tears…and pushing it, as in not letting it go… 'Cause at few points we could have just dropped the ball.” Participant 2

“Overall, I felt as though I didn't have a great deal of input to it because I didn't have a concrete understanding of what the final product was going to be.” Participant 5

"It was mostly the hospital people were talking.” Participant 4

Relationships are integral

Relationships in co-design

Relationships

“… it’s a bit about understanding the perspectives of the different stakeholders around the table and what’s in it for them.” Participant 3

“…you could feel it when you were talking to people. You could feel an underlying current.” And “’cause there’s a dynamic that we don’t necessarily know about…” Participant 2

“I think it is largely built on that notion of being able to trust” Participant 7

“…my impression is there’s been good debate and discussion, which is what you want…it’s not necessarily no news is good news, no news at times can be complete lack of engagement in the whole design process. So, I quite like seeing debate ‘cause I think that shows people are engaged.” Participant 3

Building partnerships and/or relationships

“What we try to do is build partnership in the things that we can do that they can’t. So 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….” Participant 7

“…it’s about relationships and relationship building. And as frustrating sometimes as our respective systems might find each other… in Tasmania, it’s a lot about relationships. It’s who you know and how you engage with them to get them to trust the direction that you’re taking, but also to encourage them to maybe take risks or to do things that ordinarily they might not do if they didn’t know who they were dealing with. So, a lot of it is built on relationship” Participant 7

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.” Participant 11

“…my impression is there’s been good debate and discussion, which is what you want…it’s not necessarily no news is good news, no news at times can be complete lack of engagement in the whole design process. So, I quite like seeing debate ‘cause I think that shows people are engaged.” Participant 3

“Sometimes the pace with which we would like to work and the pace with which our partners can work are two very different things” Participant 3

Challenges to relationships

Staff turnover

“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” Participant 3

“I remember one Advisory Group meeting and there was a…manager there and we'd finalised…[a] couple of the documents and they sort of said, ‘Oh no, can we go back over that?’…And you know, no we don't want to go back in time. You weren't at the other meetings, but your manager was…we're trying to move forward.” Participant 9

Different agendas

“It had a very THS DHS [Department of Health] feel. So, it really, to my mind, is their agenda and the rest of us are sort of on the edges.” Participant 4

“…people were approaching it from their role and their experience, obviously. So, we have people who are on the ground or the consumers who were, I guess, checking what actually is feasible and what works and what people want. Whereas high level people are probably more looking at the system itself. But I think we were able to compliment the different skill sets and the different experiences. So, from my perspective it was a pretty beneficial process.” Participant 8

Conflict

“I think there was potential for us to [have conflict] with [co-design participant]…so we made it our business to not have conflict and to clearly represent how we thought the services could complement each other rather than conflict each other. So, we anticipated a conflict and managed it through forming a relationship and clear communication.” Participant 2

“…there was potential for…it to turn into a research project rather than it being a service that's gonna, an operational service. And that was mentioned by people in the advisory group as well – this is a service, not a research project.” Participant 2

“I didn't notice any [conflict]. People are pretty grown up and polite.” Participant 4

Communication

“…any other healthcare rep…I think 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. I think they would have found that difficult.” Participant 12

“You know we communicated with them when it came to meetings, we communicated with them alright, but we didn’t, I don't think we ever offered more. So that whether or not people would have wanted more, I don't know. We didn't ask, ‘cause if you ask, they might want it and then you'll have to deliver it. And I probably didn't wanna know the answer.” Participant 2

Participant expectations inform their co-design experience

Expectations

Different emotions

“It was a mix of excitement and commitment and…not nervousness, but just wondering how it would go.” Participant 3

“I think we all got quite disappointed at times that things didn't look like they were going to happen.” Participant 1

“…there was certainly a high level of interest and a feeling of excitement” Participant 9

“An exercise in persistence and self-control.” Participant 7

Personal beliefs

“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.” Participant 3

“That was one of my things, is that how are we going to connect up those people who've got chronic disease management plans to, you know, having somebody come in and having an ACAT [Aged Care Assessment Team] analysis to see whether or not it's just that loneliness factor that is putting people back into hospital and those sorts of things.” Participant 6

“I have no idea [why I was asked to join].” Participant 10

Expectations of co-design

“That we would start from scratch. That we would look at how all of these things, all of these organisations and committees that we've had in the past could link in those." Participant 6

“I was never really quite sure which, what role was expected of me.” Participant 13

“As I say, I thought it might be more about general practice, but it wasn't. So, whatever, it just went on its merry way.” Participant 4

Pace of change

Pace of change

“…it's taking a long time. We, you know, when’s this rubber gonna hit the road.” Participant 4

“…let me say it's been long winded” Participant 7

Momentum

“It's been a little bit stop start, I think that's largely COVID related.” Participant 3

Engagement over time

“…a lot of enthusiasm to start with, a lot of enthusiasm at the moment, and I thought the process had died in the middle.” Participant 1

COVID-19

“…unfortunately probably because of COVID, I was unable to give the level of engagement that probably would have been ideal…” Participant 13

“I feel like it's really hard to really estimate the level of influence COVID had on that, because we were, we'd, I think we'd started at pre-COVID and you know, so there was some challenges even before COVID started in terms of getting that, that momentum built.” Participant 3

“I mean in a different world, we probably would have had more face-to-face meetings and I think that would have, that would have made things a little bit better” Participant 12

Learning from co-design

What participants learnt

” 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.” Participant 8

“I don't know that I, I mean you always learn something, but I couldn't, don't know what specifically.” Participant 11

“I think it's reinforced for me that system change is hard, but doable.“ Participant 3

Need to evaluate to inform change

“…I'm very much of the belief that we can keep adding services till the cows come home, if we don't look at how we are better joining up what we do and working on things together, then I feel like it doesn't matter how many services you put in, you're still gonna have big challenges. So…we can understand what works and what doesn't in terms of how we work together.” Participant 3

"…this is the trouble with government money, they give you money, but no real good way to do a program evaluation.” Participant 4