Introduction by Croakey: With momentum building for primary healthcare reform, it is important to consider the benefits co-design can bring, especially for people who are most disadvantaged by current systems, says a leader in the sector, Tracey Johnson.
But it is also important to acknowledge and address some of the considerable barriers to the implementation of true co-design, writes Johnson, CEO of the Sandstone Healthcare Group, which has practices at Yeerongpilly and Inala in Meanjin/Brisbane.
Below Johnson outlines some of the lessons from recent place-based initiatives, and also calls for the Victorian community health service cohealth to be properly resourced to implement recommendations for co-design of its services with local communities.
Tracey Johnson writes:
The review of general practice services provided by cohealth in Victoria has reinforced the critical role that general practices can play in improving population health. This has been a well substantiated role since Dr Julian Tudor Hart started writing about his work in poor Welsh mining communities in the 1960’s.
Through ongoing and trusted relationships with his patients, Tudor Hart did ground-breaking community health work around blood pressure and hypertension, reducing smoking rates, and in many other ways showed the value of localised care by providers enmeshed in their community.
As a community health service, cohealth has a very direct mandate from government to work with people diagnosed with or at risk of poorer health under a social model of health. The services funded through the Victorian community health model are aimed at being responsive to both the needs of individuals and the local community. This will often involve a greater focus on person-centred and coordinated care within a health and care neighbourhood.
Australia has an especially fragmented funding model for the health and social care required by disadvantaged populations. It is spread between agencies and levels of government with limited cross sectoral navigation.
The place-based community development model which thrived in the 1970’s was de-funded in the 1980s. It was too complex to compartmentalise into the program streams implemented in a drive to achieve transparency and productivity through the economic reforms of that era. In the process, we have created other drivers for cost as more people fall through the cracks in program design.
The remaining example of place-based working is in Indigenous health. The Aboriginal Community Controlled Health Organisation (ACCHO) funding model provides control to local communities to design and co-produce community interventions and healthcare.
Community juries, localised governance, delivery by those with lived experience and an ongoing accountability framework through the Closing the Gap measures ensure that ACCHOs are constantly evolving to better meet need.
Aboriginal Health Workers are tasked with advocacy for their patients and community. Flexible funding is applied to address the social determinants of health. ACCHOs themselves often receive funding from multiple sources, providing an opportunity to address the continuum of health and social care need which can mitigate the rates of illness experienced by First Nations People.
In May 2023, the Department of Prime Minister and Cabinet began consultations around a National Strategy for the Care and Support Economy. The lack of person-centred care was raised in 58 percent of submissions, with difficulty navigating systems listed in 44 percent of responses.
The challenges faced by those needing access to care supports are often exacerbated in poorer communities. These are precisely the sorts of communities served by cohealth and like organisations.
Creating place-based change
At the recent PLACE Summit in Brisbane, organisers identified five characteristics of place-based change. These were developed after extensive consultation by the PLACE team in communities across Australia during their recent listening tour:
- Community aspirations drive direction – community members and leaders set direction and make significant decisions about the work as it progresses.
- Action responds to people and place – what gets done is shaped by local priorities and context NOT external agendas or programs.
- People and organisations work together – services, organisations and community are working together with shared purpose and accountability.
- Decision-making shifts to the local level – local people and communities have meaningful influence over decisions and priorities affecting them.
- The work learns and adapts – initiatives regularly reflect on what’s working, use data to adjust course where required and build knowledge over time.
The review of cohealth called for that general practice group to once again return to community engagement to design and advocate for initiatives that would improve local population health outcomes.
The challenge for cohealth is to strike a balance between a doctor-driven approach, which identifies issues relevant to healthcare providers, and true place-based co-design.
Whether this balance can be achieved will depend upon time, resourcing and the remit provided.
The review calls for cohealth to engage in co-design, community engagement and advocacy. This would suggest a more deliberate place-based approach is warranted. If place-based change is to be achieved, the community needs to be driving the direction, not clinicians or other staff, however well-meaning they may be.
When dealing with those who are heavy users of housing, health, social care and justice systems, it is important to remember how little control they feel over their lives.
Those who use healthcare in such areas view success and systems differently to those who work in them. Rather than seeing blood pressure control and weight management as key, they are more likely to stress the importance of food and housing security as central to maintaining good health. This sits with the second characteristic highlighted by the PLACE team; what gets done is shaped by local priorities, not external agendas and programs.
How would a co-design process from a general practice and community health provider address the food deserts, homelessness and insecurity facing many of its patients? The answer would be engaging with both the population and other providers working in the area, together collaborating and advocating for change.
This is well beyond the remit of standard general practice, which is funded to see patients and improve population health outcomes through targeted clinical care.
Different perspectives
Could co-design work in a general practice setting?
At its heart, co-design is about purposefully collaborating with people to identify what the problems are. Once consensus is reached about the issue, the group can then work towards understanding the problem. Solutions can then be generated to resolve the issues at hand.
Let’s see how that plays out in general practice. Here two world views are in play. There is the medical model in which doctors are trained and where Medicare is focussed. It is the scientific framework for understanding health and disease. Everything is distilled to a physical, biological or psychological determinant; causative factors are identified and addressed.
The problem arises when the precursor or causative factors are poverty, over-crowded housing, lack of hope and exposure to dangerous agents and situations in work and life. These are psycho-social variables, which the medical model scarcely addresses. More recently trained doctors have been inculcated in the social determinants of health but our funding models have not moved to reflect how those social determinants will be addressed. That means doctors and their patients can bring different perspectives into a room.
Another difference is the differential in power between doctors and patients, and that they also often have different knowledge systems. For a compassionate and informed medical listener to be open to their patients’ stories takes considerable time, whereas a typical general practice consultation is short, linear and over in far less than 20 minutes.
Now think about the patient stories you hear at forums and conferences. Just the scene setting can take 10 minutes and the full story even longer. Stories are often circular, and inherently personal rather than globally applicable, even as the insights have wider application.
Doctors typically lead clinical consultations. They have been trained to identify the “reason for visit” and establish a management plan to address the issues of concern, which they will review and coordinate over time.
In co-design, it is the facilitator who leads the session and their role is to ensure process gives everyone a fair chance at influence. Facilitators are not there to provide opinions. They are aiming to shape consensus in the group.
Doctors share their expert judgement. Where that judgement is about a plan of action with consequential steps, they hopefully engage in something approaching shared decision making so that patients can choose whether to embrace the recommendation or not. In co-design, ultimately the group is responsible for the plan and its implementation, not the care providers.
In usual care, whether a patient fills the script, books in with a specialist or gets imaging done is their choice. Our legal system has enshrined consent as a core principle in healthcare. In co-design, consensus and collaboration more than consent are the order of the day.
Timeframes are also different. A clinical consultation is usually booked because of a problem that needs to be addressed, and the focus is therefore on the here and now. When gathering people to discuss problems as they see them, there will be a mix of historical, current and future in the conversation. The need to make a decision will not necessarily be pressing.
Some issues are so hard to understand that it may take many discussions before the room even has a shared view about whether all the right people are gathered to have their say, let alone form an opinion about the real problem. People in the room can struggle with whether progress is being made and value generated.
GPs in Australia receive their income from the time they spend in front of patients. The practice where they work receives around 15 percent of its income from generalised incentives provided by government. The rest comes from taking a service fee from the doctors (typically 30-35 percent of the item number charged) so even practices are focussed on income-generating patient time.
Community consultation and associated meetings have no funding source. In Victoria, community health service providers receive some state government grants for performing broader community health activity. This may involve designing new services, providing community education and advocating for change in the way healthcare is delivered.
Ways forward
Embracing co-design requires a different mindset, a dedicated funding source and different facilities and skills.
Given the growing scarcity of GPs, expecting them to design and drive co-design is perhaps not the best use of limited resources. Other people within the organisation would be better placed to organise the co-design activity.
Those people will need to understand the difference between co-design and the consultation sessions most of us have become experienced in. Consultation occurs when a provider or agency has defined the problem, generated a solution and wants feedback on aspects of that solution or approach. This can be useful in supporting better service delivery, but it is rarely transformational. It is never co-design.
Gathering people in a venue and asking them to nominate areas of greatest concern in a broad domain is very open ended. It can feel very risky. For that reason, most organisations ask users the equivalent of whether they want blue, red or white paint in a redecorated service centre, rather than asking them what sort of service centre is required.
This is a tad more inclusive than Henry Ford (who famously said buyers of his vehicles could have any colour they wanted, so long as it was black) but hardly the shared platform for decision making that can produce the novel ideas that garner shared commitment.
What is interesting about co-design and place-based working is that communities can galvanise around surprising topics. Perhaps it is getting more bus routes and shelters on those routes so that they can get to health appointments and be involved in more active travel to work.
Once they are confident around their capacity to influence change, and proud of their collective achievements, they will be more open to problems that might have a more direct association with health.
It is important during the early phases of group formation that health providers stay in the game. Leaving the room because the issue is not sufficiently health-related can be seen as arrogant and distant, and risks reinforcing the tensions and hierarchy which could undermine later co-design efforts.
Being part of the team means being there as a team through the process of surfacing issues and working on them. The relationships built will generate the credibility and trust which the likes of Dr Julian Tudor-Hart used as the foundation for his community health interventions.
Associate Professor Amanda Tattersall from the University of Sydney has recently released ‘People Power in Cities’, a book produced in collaboration with Kurt Iveson.
They looked at cities around the world to search for strategies people are using to successfully fight for a greater say in how their cities or suburbs are run.
In studying successful collective action, they distilled the strategic dilemmas faced by each city organising group:
- Who is involved and who do you need?
- How do you make decisions?
- What problems and issues will be addressed?
- How will the work be funded?
- Where will the work occur?
- What tempo will you work at?
- What preferred tactics will be used?
- How do you define success?
Framework questions
There are many overlaps between these key questions and good place-based co-design. The Co.Design4All Framework starts with discovery.
This framework asks: What is the current state? Who holds data which can be used to explore issues bubbling beneath the surface? Who is typically engaged and who is left out in the cold? What history is there of innovation and where did this lead?
Having this background is critical for determining who to assemble in a room for co-design. It will mean doing some exploratory engagement with the usual suspects and those who wield power and influence behind the scenes. That can feed into a plan for how to design the co-design.
Failure to do this first means the folks you get in the room can be poorly briefed, soured from previous encounters and ambivalent about your topic of interest.
Discovery takes time. It is not a quick exercise in reading a Primary Health Network needs assessment and deciding which of the priorities will be addressed in your sub-regional community. It is not about picking one indicator from the many problem statistics you can identify within the data produced by extraction tools like Primary Sense, Polar or PenCS. It is not even trying to improve results from audits of your patient charts.
These approaches all imply that an issue is the most important because a clinician or reporting engine knows best. Rather, it is really about canvassing the agenda – an agenda you do not control because it is the wider community’s agenda.
This is where patient advisory committees attached to a general practice can play a fundamental role. Not only can they help clinicians interpret clinical trends and feed into quality improvement activity (the most common reason patient advisory groups are formed), but they can look at wider community issues and determine which are worthy of exploration.
A general practice might only attract certain sorts of patients. This can mean their data is not showing another critical trend. If those “easy to ignore” patients have nowhere to go, this is a community health problem. It could be the ticking timebomb driving more hospital use and future health demand which nobody is attuned to.
To make population health outcomes more equal – rather than just concentrating on providing more services – a different approach is required. That work will have to focus on solving unmet and latent need. It must explore the social determinants in detail and use patient experience to identify priorities and flesh out options.
Patient advisory committees are an example of community engagement. They can be fraught. How do you pay for patient time without creating expectations of inclusion in practice operations that might be unfounded? How do you manage confidential and private information at a neighbourhood level? How do you educate the participants for their role in the absence of a national movement around patient advisory functions?
Community advisory committees would be another opportunity for community engagement. They generally involve stakeholders in the healthcare neighbourhood with a more minor role played by patient representatives. Perhaps the patient representatives are nominees from the patient advisory committee willing to provide a bridge between user experience, service delivery and other stakeholders like local councils and hospitals.
There is also the internal community of every general practice: the clinicians and administration staff involved in direct patient care. Where external engagement mechanisms produce ideas for change, it is this group that has responsibility for translating those ideas into action. It is also their role to make such innovation safe, staffed and sustainable. The strategic dilemmas identified by Tattersall and Iveson are just as relevant to this group.
Requisites for success
This article has made the case that moving outside of clinical consulting rooms to work on the practice is not as easy as an edict to engage community or do co-design. It needs to be thought through and well supported by time, training and tools.
There need to be dedicated staff driving these functions who have the right to consult widely and design inclusive activities – because every community has many who are excluded, and who usually have worse health outcomes.
That is why being deliberate, being very engaged and going with the groundswell is much more important than clinicians asking for answers to their questions around why patients are non-compliant. Patients may just be behaving very rationally as they negotiate the competing priorities and suboptimal choices and services they face each day.
Being prepared for where those questions will lead is just the beginning of what will be a very different form of work in general practice.
It is the beginning of the clinical governance journey that high performing practices need to embrace as highlighted recently in the report ‘Progress by Design: Change Readiness and Breakthrough Innovation in Primary Care’.
That report (covered at Croakey) highlighted the need for clinical governance to evolve to include roles for patients, community and carers as well as the clinical unit. It noted the need to use population and practice data to address population health needs.
It called for sustainable investment in team-based care and the clinical governance and organisational leadership required to make those new models of care fit for purpose.
There are lessons for us all in the call for cohealth to embrace co-design and community engagement. One of them is that we need to support cohealth gain the resources needed to act on the recommendations in their recent review.
If they do, there is hope for primary care more generally that we can take patient trust to a new level of engagement through serious re-organisation of how we do clinical governance and practice planning.
Healthcare neighbourhoods might start to thrive in such an environment, overcoming the fragmentated nature of our care systems.
The result should be the vastly improved clinical outcomes achieved through comprehensive general practice activity, exemplified by Dr Julian Tudor Hart and the many he inspired.
Author details
Tracey Johnson is CEO of Sandstone Healthcare Group, which runs practices at Inala and Yeerongpilly, has a national reputation for advocating for health equity and primary care transformation. A Churchill Fellow and health services researcher, she is the Deputy Chair of the AIHW Primary Care Advisory Group, was a member of the Expert Advisory Group which undertook the review of General Practice Incentives and After Hours Payments and was on the evaluation committee for the Health Care Homes programme. She is also co-founder of Cubiko and Co.Design4All, both digital solutions aimed at improving performance in healthcare.
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