“Nothing about us without us”: New framework elevates consumers’ voice in healthcare

Sally Hussey

Launched in February 2019, Safer Care Victoria’s new Partnering in Healthcare: A Framework for Better Care and Outcomes is ambitiously, indeed courageously, trailblazing positive change in healthcare across Victoria.

The new framework elevates consumers – people, families, carers and communities of healthcare users and representatives – in bringing together key partners to implement one of the most successful examples of a health framework for improved patient outcomes. Given the current changing role of the healthcare consumer, it is now an expectation that consumer participation in their own treatment is a key indicator of healthcare performance and quality. But Safer Care Victoria reframe this role. For as, Director Consumers as Partners, Louise McKinlay ’s forward suggests: “Consumers play a vital role in helping us to avoid making the same mistakes repeatedly.”

Using a consumer-centric methodology, where people were asked what was most important to them, the new framework aims to address three essential issues. These fall into: consistency in how Victorians can participate in their own healthcare; assisting health services involve consumers to deliver safe, effective person-and-family centred care; and, “clearly describe consumer priorities for health services.”

A “living document” of safe, person- and family-centred care

To be sure, partnering with consumers is the key driver and commitment behind the creation of this “living document” – indeed, a key driver behind Safer Care Victoria’s mission. As a “living document”, it will be updated throughout its lifetime and its progress, which includes an upcoming forum and, in 2020, a summit.

Partnering with consumers revolves around two guiding, interweaving priorities. Firstly, to ensure consumer voices and choices are central to their own care. (This will ensure that consumer-defined outcome measures and improvement goals are being delivered at a health service level.) And secondly, that consumer voices and experiences drive health service and health system improvements to improve people’s experiences. That is, to “deliver higher quality care that is safe, person- and family-centred, equitable and clinically effective.”  

Co-designing inclusive healthcare

Rising to the challenge and need to develop a framework for consumer participation, Safer Care Victoria’s overall improvement of equity in treatment and care options, crucially, also aims to reduce healthcare variation across Victorian health services.

Extensive consultations informed the framework’s inception, reaching over 180,000 people across the state. Over a five-stage prioritisation process, the consultation went through an initial desktop research, a project team with consumer and health sector representatives, online engagement, the data analysis of over 3,000 contributions, and offline engagement where consumers and health sector stakeholders were represented in a 2:1 ratio.

From its inception, the framework has been primarily designed for people working in health services. But its ambition is tangible in the following qualifier for “those health services that want to go beyond what is required.” This reaches well beyond the confines of its design for public health services. Especially in its potential relevance for private hospitals, community health services, Aboriginal health organisations and primary health networks, to name only a few.

In its practical delivery, however, it will help respond to the needs and expectations of Victorian consumers through its delivery of resources. These will be developed through the very implementation of the framework, currently rolling out across Victorian health services and providers –  an ongoing process that will ensures that all stakeholders co-develop potential solutions.


Building conversations with consumers

Underpinned by best practice, the framework comprises five domains – each a focus point for improvement of consumer experience and outcomes.

In keeping with the framework’s mission, these have emerged through consumer consultation, feedback and experience. The domains – ‘Personalised and holistic’, ‘Working together’, ‘Shared decision-making’, ‘Equity and inclusion’, and ‘Effective communication’ – serve not only as reference points to help health services identify areas for improvement. But they work to bring about impactful change and help providers understand where their resources are better invested to help create change and strengthen quality care. To summarise the five domains:

Personalised and holistic recognises people have agency which is afforded by placing them at the centre of care by healthcare professionals. Considering the whole person or family, in individualised care, this creates understanding for their physical, cultural and social context and what matters to their individual wellbeing and safety. It also considers how people shape their own lives, health and wellbeing.

In Working together, high-quality relationships between health professionals and consumers becomes an exchange of knowledge, experiences, and values which fills in the gaps for both stakeholders. This creates a collaboration and engagement among consumers, families and health professionals.

Shared decision-making sets out how consumers and health professionals can take joint ownership of decision-making through collaboration. Here, decision support mechanisms are to fortify consumer understanding of the issues at stake. It, importantly, also supports community participation in healthcare governance, encouraging consumers to ask questions regarding healthcare decisions.

Equity and inclusion ensures fairness, dignity and respect for diverse communities involved, ensuring true representation in healthcare participation opportunities so that all people receive care of equality quality that is safe, effective and person-centred.

Effective communication underscores health literacy, “an enabler of…participation in healthcare”. This spearheads clear and accessible information and includes active listening and online engagement.

Health service providers have been advised to choose a minimum of two domains of focus by 30 June 2019. With a vision in place for the implementation of the framework by 2020, Safer Care Victoria are looking to collaborate with stakeholders to design an evaluation strategy which can map and measure learnings and outcomes.

Trailblazing impact in healthcare

Currently in the midst of rolling out its implementation across all Victorian public health services, including public hospitals, evaluation and support resources roll out in the latter part of the year, leading up to the 2020 Partnering in Healthcare outcomes summit.

This ensures the development of a practical resource and serves as a record of improving partnering with consumers to achieve better, more consistent outcomes. It also provides many opportunities for consumers to be meaningfully involved in all levels of healthcare. As it signals that consumers can participate in their own healthcare and treatment, service design and quality improvement as well as participate in system-wide safety improvement.

It is significant to add that this new framework is initiating a cultural shift across the health sector. For it is in opening up meaningful opportunities for consumers to partner in their healthcare that it is both innovative and trailblazing in its potential impact to healthcare services across the state. This is redoubled in its very creation. For equal to a sector lead, keeping the project connected to health services, a consumer lead was employed as part of team to ensure consumer voices were central to work.

In the framework’s longview, this ensures consumers have the opportunity to ask questions about their rights and care options – they are involved in planning and shared-decision making. It also guarantees the recognition of the social determinants of health. 

Sally Hussey is a Melbourne-based writer and Bang the Table’s Senior Managing Editor of Content and Research. She has an extensive background in the publishing, academic and cultural sectors.

Banner Photo by Arvin Chingcuangco on Unsplash

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