Health systems in many jurisdictions recognise the importance of actively involving health consumers while planning the delivery of healthcare.
There are widely acknowledged benefits from working closely with consumers – put simply, a service that is developed with a local community will deliver healthcare that meets the needs of the people who use and deliver these services.
There is an incredible variety of roles a consumer can play during decision-making, and participation can range from basic consultation to the true co-design of services in an effective partnership model.
Many services, at a local level, can engage widely with diverse, local communities, but what does true consumer engagement mean for an organisation, such as the ACI, which produces organisational models of care at a system level?
We are an organisation with a long history of partnering with clinicians and consumers in a co-design approach, which continues to be important in how we work today. We have recently reviewed how we work to embed involving people with a lived experience of a relevant service or health condition more consistently in our work. The application of co-design methods requires investment in skills, attitudes and behaviour change, at the individual and organisational level, to shift dynamics and drive real change.
The first key direction in our Strategic Plan is to engage patients, clinicians and managers. This means developing person-centred innovations where patients and their families contribute to the innovation process, which in turn respond to a person’s health needs and situation. We also committed to championing evidence-based and person-centred approaches that will enable people to manage their own health and wellbeing, through a social determinants of health lens.
Increasing capability to embed consumer engagement
Last year, we established a dedicated Patient Partner role to support our organisation in furthering capability in working with consumers. The ACI Executive and Leadership teams are working closely with the Patient Partner to develop a strategic approach that provides stronger support for consumer engagement across the organisation.
Earlier this year, ACI staff developed a ‘Recognition of lived experience’ as a way to express appreciation for the contribution that patients and carers bring to our work. The final text of this recognition is:
I recognise and appreciate consumers, patients, carers, supporters and loved ones. The voices of people with lived experience are powerful. Their contribution is vital to enabling decision-making for health system change.
Such a recognition is already routinely in place in many mental health services, and ACI staff have been encouraged to use the wording at the beginning of formal meetings. We are now promoting this wording to others in the health system, and have already had a positive response and witnessed an uptake of this statement.
Our influence extends to increasing capability across the health system to better engage with consumers at a service delivery level. We recently launched a roadmap to working with consumers, which supports local health districts and specialty health networks to partner with consumers and develop a maturity to increase the level of engagement and influence that consumers can bring to decision-making. This work was complemented by a co-design toolkit with practical resources to adopt a true co-design approach.
We are exploring and using different types of knowledge and evidence in how we engage with consumers. For example, we leverage collaborative partnerships in mental health; we use cultural practices and protocols for engagement by training teams in 8 Aboriginal Ways of Learning; we participate in evidence-based co-design in projects to benefit people with chronic obstructive pulmonary disease; and we work on programs to enable clinicians to discover and improve what is important to an individual patient, bringing together research and empirical and experiential evidence.
We need consumer input for the breadth and depth of unique information and knowledge of what is important, and how we can make a difference to consumers' lives and experience. For this to be a meaningful interaction, we must ask what is truly important to a patient. At a local level, focusing on how care is delivered, how can a clinician be enabled to deliver true patient-centred care without knowing individual preferences?
The Patient Reported Measures Program asks patients exactly this. Patients have the opportunity to provide feedback about their experiences of care and what is important to their lives. This allows clinicians to focus on providing patient-centred care where the clinician-patient relationship is focused on the same objectives. The ACI is partnering with eHealth to deliver the systematic collection and use of patient-reported measures as a key demonstration of the value we place on patient engagement.
Engaging consumers in our work means a lot of different things at the ACI. It starts by engaging people in our activities and programs, to developing and implementing models of care and new systems that enable a stronger voice from consumers. Despite all the challenges involved in doing this right, it is the right thing to do.