Co-design by those with real skin in the game - patients

 Health services can often intrude into sensitive and significant aspects of our lives in ways we have little control over.

The sense of being at the whim of anonymous forces in a big hospital is a common place experience for many. The same applies to the experience of navigating what at times is a labyrinth of community based health services. The lack of any effective individual influence over the cost, quality and availability of medical services whether they be for an ophthalmologist or a psychiatrist is a common experience for patients in Australia.

Many of us are so resigned to the sense of impotence that we may not have even thought of taking part in the shaping of more consumer-centred services.

That is changing with the development of fresh approaches to harness the knowledge and experience of the people with real skin in the game: patients.

The innovation is called Consumer and Carer Co-Design. The idea is to give consumers, patients and carers an active role in designing and influencing services to ensure the best possible experience for people who often are already undergoing a testing experience because of medical treatment.

The Consumers Health Forum of Australia (CHF) and the Australian Healthcare and Hospitals Association (AHHA) are collaborating to present a Masterclass on experienced based co-design on 27 May in Melbourne (click here for more information).

It’s the first in our Partnering With Consumers 2017 joint workshop series and will explore the evidence for working closely with patients and their families and to foster awareness, use and assessment of co-design practises and tools.

The idea is to invigorate patient-focused practises through the promotion of co-design to consumer advocates, Primary Health Networks and hospital staff.

As the NSW Agency for Clinical Innovations (ACI) says in its report Patient Experience and Consumer Engagement: A Framework for Action, consumers are the only constant throughout the patient journey.

“They are therefore the experts in terms of identifying their desired health outcomes and experiences of illness and care, and their expertise should be sought and respected in order to improve the quality of care. Shared decision-making, support for self-management and proactive communication are key features of person-centred health care.”

ACI points to a growing body of evidence showing that patients’ experience of care has a direct correlation to their health outcomes and that staff experience affects the performance and efficiency of the whole system. Patients often use different measures to health care workers to assess their health experience. For example, patients measure the quality of care provided against the level of dignity and respect they received, whereas staff may focus on how well they worked together as a team to judge coordination of care.

So, it might appear to consumers that the natural development of health services has been influenced most by the services, clinicians and staff who provide them. Often these may have been with the patients’ health outcomes in mind, perhaps with little thought about lesser but not unimportant issues like communication, reassurance, comfort, and access for the patient.

Co-design is already being used in the United Kingdom and New Zealand to gather the experiences of patients and staff and use these to guide the development and improvement of services. It’s being practised here in Australia too but is not routine or widespread. There’s opportunity to adopt evidence based co-design more systematically and strategically, particularly as Primary Health Networks and Local Hospital Networks continue to face several pressure points in our health system.

The UK King’s Fund says the experience-based co-design used there is a fresh and flexible approach that can often steer scrutiny towards hidden factors shaping patient experiences. It might for instance identify that the most frustrating aspect of long waiting times relates to poor communication rather than the wait itself.

The UK’s two-way approach involves gathering experiences from patients and staff through in-depth interviews, observation and group discussions, identifying key emotionally significant ‘touch points’ and assigning positive or negative feelings.

A short edited film is created from the patient interviews. That is shown to staff and patients, seeking to convey with impact how patients experience the health service.

Staff and patients are then brought together to explore the findings and to work in small groups to identify and implement activities aimed improving the service or care path.

The King’s Fund says that the approach was designed for the UK’s National Health Scheme to develop simple ways to improve patient experience of treatment and care.

It acknowledges that similar user-centric design techniques have been used by leading global companies for years. It says the approach has already been used in a range of clinical services, including cancer, diabetes, drug and alcohol treatment, emergency services, intensive care, mental health, orthopaedics, palliative care and surgical units.

So it seems well past time that Australian health care should be looking to stimulate a more organised direction to co-design and to adopting the customer focused practices so commonplace in every other service industry.

The concept fits very much with the consumer-centred approach promoted by the Consumers Health Forum. Real People Real Data is an innovative tool developed in recent years by the Consumers Health Forum that collects stories about patient experiences in order to guide health care practice. See

  • The co-design masterclass will run from 8.30am to 5pm in Melbourne on 25 May and will be presented by Dr Lynne Maher, Director of Innovation at Ko Awatea. She is an international leader on health system innovation, including experience-based design.

The Partnering With Consumers 2017 series is sponsored by PwC.

For more details see:


About the author

Leanne Wells

Leanne Wells

Chief Executive of the Consumers Health Forum of Australia

Alison Verhoeven

CEO of the Australian Healthcare and Hospitals Association