To achieve truly patient-centred care, consumers need to be involved throughout the planning, design, delivery and evaluation of any new innovations in healthcare. The ACI’s Clinical Innovation Redesign and Consumer Engagement team share their advice on how to partner with consumers to improve healthcare services.
“Healthcare organisations benefit greatly from working with consumers. It has multiple benefits; not least of which is the design and delivery of higher quality health services that meet the needs of the people who use and deliver them,” explains Elizabeth (Liz) Newton, Patient Partner at the ACI.
So, who exactly are ‘consumers’? “At the ACI, we view the term ‘consumer’ to be inclusive of people, families, carers and communities who are current, previous or potential users of health services,” says Liz.
Developing meaningful partnerships
“Meaningful partnerships with consumers means partnering with them in multiple ways to really understand and capture what the individual, community and cultural needs are,” explains Jessica Leefe, Consumer Engagement and Co-design Manager at the ACI.
The International Association for Public Participation’s (IAP2) ‘Spectrum of public participation’ is the global reference point for health consumer engagement.
The spectrum clearly defines the different levels of participation, which can be seen in the diagram below.
Increasing level of engagement and influence
Consumers lead the development of activities, products and services with appropriate advice and support
Consumers co-lead the development, design, implementation and evaluation of activities, products and services
Consumers are represented and can make recommendations and influence decisions
Consumers are invited to provide feedback about products and services developed
Consumers receive information about the group's activities (e.g. by being subscribed to the mailing list)
The spectrum of public participation. Adapted with permission: International Association for Public Participation.
The different levels represent the increasing level of decision-making consumers have in participation.
“There is a common misconception that Empower (at the top of the ladder) is what we should always aspire to; but higher levels of participation are not always better,” warns Jessica.
“It is more important to ensure the level of engagement is fit for the purpose of the activity at hand,” she explains. “Be clear about the type of engagement and partnership being undertaken; why that level of engagement has been chosen; and be transparent about which of their ideas can be delivered within the context of that setting or system.”
A recent example at the ACI involved a consumer partner coming on board to help create a series of short videos about consumer partnership in health. He was invited to review, edit and guide the video scripts, enabling an authentic representation of the consumer perspective, as he had been involved in co-designing a health project for people with low vision last year.
The video project used a combination of the engagement levels. It neatly demonstrates creative ways we can work with consumers. The videos also engaged clinicians and Aboriginal health staff, further deepening the collaborative partnership approach taken.
To read more about how consumers can participate at each level of the spectrum, visit the ACI’s Partnership foundations web page.
Planning for successful partnerships
“The key to successful consumer partnership in health innovation and improvement lies in planning,” says Liz.
“A considered consumer partnership plan will outline how to establish the partnership and enable authentic engagement which will bring an innovation to life and ensure it meets the needs of the people it is intended for. It will also ensure a diverse range of participation to engage a broader group of people with relevant lived experience. The consumer partners will then help identify problems and solutions, as well as generate and test solutions in partnership with the health team.”
Tools and resources
The ACI is dedicated to increasing the capability of its workforce, clinical networks and health services to further extend our work with consumers and create more equal partnerships with consumers for innovation.
“We are developing practical resources to increase capability across the health system to better engage with consumers,” explains Jessica. “This includes strategies for partnering with consumers in meaningful ways; and providing the tools to partner and co-design solutions with consumers that better meets their needs.
“Our new Working with consumers web content aims to provide NSW Health services with the information, resources and tools needed to take a best practice approach to partnership. It provides a step-by-step guide and set of tools to apply throughout the process of partnership.
“Our Co-design toolkit provides a practical way for teams to unlock the behaviours required to work in equal partnership and deliver service improvements that matter to the people who use them.”
A supporting library of resources, tools and templates underpins these web pages and will continue to expand. Other useful information can also be found on the Consumer Health Forum Australia and Health Consumers NSW websites.
Read our guest editorial from Dr Anthony Brown, Executive Director of Health Consumers NSW.
Myths and misconceptions of consumer partnership
Liz demystifies the most common questions around consumer partnerships.
- Why do we need consumers? For breadth and depth of information and knowledge – unless we hear from consumers and families, we have no way of really knowing or understanding whether our ideas, plans and strategies for improving and innovating health will make a positive difference to their lives and experience.
- We are all consumers and family members! Yes; however, unless we are living that experience of the health system at the time of innovating or improving, we cannot possibly relate or truly understand. Additionally, by virtue of working within the system and being conditioned to this system, we cannot bring an objective view to the discussion and represent the system and lived experience simultaneously. We may only see the part of the patient journey that we as clinicians deliver, patients experience the whole journey and how it connects.
- How can one consumer represent all consumers? They can’t! This is why a varied and multi-pronged approach to consumer partnership is important if we are to get a diverse and deep representation.
- They are ‘professional consumers’; we need ‘real’ consumers. It’s important to diversify engagement and make sure many levels of engagement are activated to get breadth and depth.
- I am the expert; I know what consumers want! Refer to the first point – your expertise is as a clinician or health worker.
- Will consumers be unreasonable in their demands? Rarely is this the case. People simply want to feel heard, informed, safe and respected.
- Needing to include consumers will slow us down. While front-loading some time with consumers does slow the pace; the benefits are increased likelihood of success, implementation and sustainability – saving time down the track.