Value of insights from ‘the inconvenient guest’

An increasing challenge in the modern health care system is the dilemma of balancing hospital and clinician needs to meet both clinical and economic demands with patients’ needs, which are highly variable.  This dilemma perpetuates an imbalance of power and knowledge between clinician and patient. It hinders patients being in charge of their illness and being fearless in asking questions and enabling responsibility for their health decisions.

Consumers can also play a vital role as social change agents to dismantle the existing power and communication paradigm with clinicians and evolve a health-literate community. To date consumer participation has made a significant impact on clinical practices, allowing the ‘person’ voice to be heard and understood. Collectively, consumers also have the power to drive changes in the system, to embed a cultural change toward a health-literate, person-centred care service, resulting in health equity and optimal health outcomes.

Whilst consumers bring their whole person to the conversation, there remains a sense of an ‘inconvenient guest’ associated with their involvement in formal consumer participant forums. From my recent conversations with peers, I observe there’s an ongoing need to ensure consumer participation is a true partnership, respected and valued, and with outcomes adding deep insight to the broader patient and clinical community, as well as the quality systems of the hospital.

Whilst consumers bring their whole person to the conversation, there remains a sense of an ‘inconvenient guest’ associated with their involvement in formal consumer participant forums.

The Victorian Consumer Participation Framework was introduced with the establishment of Community Advisory Committees, into metropolitan health services in 2000, and into regional health services in 2004. Whilst progress has been made in integrating consumers into policy and advisory roles within services, there remains a major opportunity to help close the gap on health inequities and improve health outcomes by investing more in partnerships with the true ‘user’ of the health system.

I am buoyed by the inclusion of health literacy as a component of the National Safety and Quality Health Service (NSQHS) Standards, as another opportunity for consumers to work with clinicians and administrators to have health literacy tools embedded into all communications with health service users.

A Patient Story: Jim and his family

Jim is 89 years old and hospitalised for a medical condition. Whilst an inpatient, Jim was diagnosed with dementia and prescribed medication to assist with lessening his dementia symptoms. His family acknowledged he was giving ‘odd’ answers to questions but explained “this was Jim – his lifelong personality”. Whilst taking the medication Jim’s health deteriorated. He lost his appetite and had a dramatic weight loss, which further exacerbated his medical condition. To his family, ‘it just didn’t add up’! Their Dad hadn’t changed in his behaviour. Jim’s family requested a review given Jim’s deteriorating condition, which seemed to them related to his dementia medication. Unsuccessful in changing his specialist’s view, Jim’s family turned to the family GP whose relationship with Jim was long standing. He reviewed Jim’s medication, and determined dementia medication was unnecessary. Once Jim stopped dementia medication his health improved and he returned to living independently, with his personality quirks continuing to be understood by his family.

Tools helping consumer participation have a similar impact to Jim’s story.

While Jim was lucky to have a family helping him to be understood this is not always the story. Communication tools such as ‘What matters to me?’  ‘Teachback’ and CHAT have been developed through patient/consumer consultation as a redress to ensure the “Jims” are always heard.

Co-designing with consumers these protocols for conversing with patients, and their families/carers, helps ensure person-centred care will always be at the heart of any interaction, treatment or discussion with and about patients. Co-design with consumers is also essential to reach and maintain safe, high quality health services and to the evolution of health literate communities.

There are many Jims and families to be listened to.  As we move forward in the quality era of person-centred care, the practice of ‘clinical expertise’ having priority in leading care discussions must be continually challenged. Community Advisory Committees are key contributors to improve safer care and health literacy, both for patients/families/carers,the community and the health system.

Learnings required

  • Acknowledge unconscious bias within the clinical community
  • Note family fear of challenging medical opinion/ being challenged
  • Acknowledge patients and family/carers are expert in their own history
  • Value finding out about patient – listen to family, observe individual in context
  • Engage with patient and family/carers to create an empathetic conversation with focus on person-centred care.

At a strategic level, Community Advisory Committees are working with health services to collaborate, co-design and research their organisation’s strategic vision and operational plans to influence organisational policy and system processes.  This high-level committee is fundamental to improving the health care received within these organisations:

Within a large metropolitan health service, there are many formal governance groups that require consumer participation. Some examples at my organisation are shown below.

Consumer Participation & Community Advisory Committee Activity Examples – designed to improve safety, quality & health literacy

  • Representation on Clinical Council
  • Development of Equity and Inclusion (E&I) Policy,
  • Electronic Medical Records (EMR) Development and Implementation, staff training
  • Co-design of Medication Safety procedure
  • Co-Design Hospital in the Home program
  • Developing Consumer Glossary of health service, including clinical, terminology
  • Advanced Care Planning Advisory
  • Dying with Dignity Advisory
  • Health Literacy Advisory, and training: Teach Back
  • Review of patient information literature
  • Gathering of Kindness Patient Stories
  • Membership of Key Strategic Committees: Safety and Quality, EMR, E&I

To illustrate the capability of health services and consumers being equal partners from policy to research, to delivering safe, quality health care, I share the following project:

Emotional Support in Emergency Department: Improving the Patient Experience

Problem Statement

  • Patients are not feeling emotionally supported in ED
  • Staff are not certain of the factors that contribute to patients not feeling emotionally supported

Project Aim

  • To elicit the perceptions of patients, family members and/or carers regarding the provision of emotional support in the ED setting.

Research Approach

  • Design: qualitative, exploratory descriptive study. Individual or dyad (patient and family/carer representative) semi-structured interviews
  • Sample: 20 interviews
  • Ethics Approval required:  Yes


  • That patients/family/carers to feel emotionally supported during their time in ED by providing services to meet their needs
  • That ED staff is resourced to provide emotional support their patients

The Future:  Where to?

In considering the future, I offer some priorities for continuing improvement of health outcomes and equity via consumer participation: I look forward to reporting on our progress.

  • Embed consumers into the fabric of health care as equal and welcome partners in ensuring safety and high quality, via collaborating, co-designing and researching improvement in patient care and experience, at all levels of the organisation, including communication with the Board.
  • Focus on health literacy to correct the information imbalance between patients and clinicians. While respecting clinician expertise, consumers are able to ask questions and to be in control of making treatment choices.
  • Ensure greater population health collaboration to coordinate care and facilitate consumer engagement within local communities to address their needs.

While clinicians and administrators remain a major voice in decisions about the health system, strengthening the collective consumer voice will lead to rebalancing the health care relationship. Progressing consumer participation in all elements of collaboration, research, co-designing policy and health services is fundamental to improvement. The inclusion of health literacy in the NSQHS Standards will over time enhance the agency of, and access by, patients/consumers and local communities, helping to drive the reform required to achieve health outcome equity.