The importance of codesigning chronic disease management programs and services with people with lived experience

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One in two Australians (47%) had one or more of the most common ten chronic conditions in 2020-2021.

While we often think of codesign approaches in the context of mental health service design, at Larter we think it’s equally important to use the same approaches in continuing to improve our response to the challenges of chronic disease. Chronic conditions are the leading cause of illness, disability and death in Australia, and we need to accelerate our response across the continuum from prevention, screening to treatment, in ways which are the most meaningful to people living with chronic disease.

Codesign is a collaborative approach that involves bringing together different stakeholders, including people with lived experience, to design and develop programs, policies, or services that meet their needs. In the context of chronic disease management, codesign involves working with people with lived experience of chronic disease(s) to develop programs and services that are tailored to their needs.

Here are some reasons why codesign with people with lived experience of chronic disease is so important to us.

1. It ensures that programs and services are consumer-centred

Codesigning programs and services with people with lived experience of chronic disease ensures that they are developed with the consumers’ needs, experiences, and preferences in mind. By working with consumers with experience of a particular chronic condition or care pathway, commissioners and health providers can gain a better understanding of what it’s like to live with a chronic disease and tailor programs and services to address the unique challenges consumers face.

This is really important to ensure the care pathways and journey mapping  is localised or tailored to the context of a consumer group. For example, this might include:

  • the experience of living with co-morbidities, and navigating an often-uncoordinated health care system to meet multiple care needs, or
  • the experience of living rurally with fewer service options, and the greater need for fit-for-purpose use of telehealth, or
  • the experience of gaps in cultural safety in mainstream services.

Larter has worked with multiple rural PHN clients to co-design chronic disease interventions including social prescribing and after-hours service planning. Co-design allowed us to highlight the unique challenges and concerns of rural populations such as access to transport, reliable internet connectivity, and to make recommendations to our clients based on this feedback.

2. It improves consumer outcomes and satisfaction

Involving people with lived experience of chronic disease in the design of programs and services can improve consumer outcomes and satisfaction. By amplifying consumer voice and experience, healthcare providers can identify areas where service improvements can be made to better meet consumers’ needs.

A key recurrent theme we all continue to grapple with is the gaps for consumers in care coordination and service integration.

Larter has assisted clients in achieving this through the co-design of evaluations, outcomes frameworks, and the use of patient reported outcome measures as well as patient reported experience measures (PROMs and PREMS). A recent example is the co-design of an outcomes measurement framework with consumers (including family and carers), as part of a chronic disease management program commissioning strategy in regional Victoria.

3. It can lead to more effective prevention and management strategies

Codesigning programs and services with people with lived experience of chronic disease can help identify gaps in current prevention and management strategies. By working with consumers, healthcare providers can gain a better understanding of what’s working well and what needs improvement. This can lead to the development of more effective prevention and management strategies that are tailored to the needs of the consumer.

Our community and consumer engagement work in Latrobe Valley for Gippsland PHN as part of the Latrobe Health Innovation Zone activities to improve rates of early detection and screening of chronic disease, identified several key findings and recommendations to improve lifestyle modification and engagement in risk screening:

  • Community members are often unaware of the 45-year-old health checks available in general practice
  • Basic health checks have not been normalised in similar ways to other screening campaigns that are well-known and accepted in the community including for skin cancer, bowel cancer, breast cancer, prostate cancer and cervical screening
  • Access to health checks should be provided outside general practice settings in the community
  • Nurses (primary care nurses where possible) should be mobilised to engage community members in preventative care and health checks

This led to the design and trial of the following interventions:

As part of this work, we also heard about the importance of local lived experience stories as motivators for prevention and early intervention. Community members told us about the importance of hearing stories about others who might have been pre-diabetic for example and who were able to reverse symptoms through lifestyle modification, or those who were impacted by family members’ experience of losing a limb to make lifestyle changes to reduce their risk factors.  

Designing for outcomes: Strengthening the value basis of care

Codesigning programs and services with people with lived experience of chronic disease is crucial to delivering improved outcomes and value-based health care. We need to be listening to consumers more to understand the health outcomes that matter to them the most, and then work on delivering them in the most cost-efficient and system-efficient ways.

Codesign is also at the core of efforts to achieve the Quintuple Aim in primary health care and is a key tool in our toolbox.

By leveraging our experience of working closely with consumers, Larter helps healthcare organisations plan, design and evaluate services that address the unique challenges faced by consumers at risk of poorer health outcomes.

Get in touch to learn more about codesign or how to involve people with lived experience for your organisation’s goals. We’d love to help!