A non-government health policy and research centre
Health Issues Centre

Consumer Experience

Articles where consumers write/speak of their experiences with the health system or as a consumer advocate.

An insider’s experience of the healthcare system

Health professionals are trained to be attentive to patient needs and to continually re-evaluate and process both physical and verbal cues in order to provide the best treatment possible. In spite of this, the system continues to produce adverse outcomes. The following is one young man’s reflections on such and experience.

Victorian Health Care Association Issue 2 July 2009

Are You Talking To Me?

Are you talking to me? Negotiating the challenge of cultural diversity in children's health care 2008.The project examined health interactions between families from culturally and linguistically diverse (CALD) backgrounds (1st and 2nd generation) and health professionals, with a particular focus on the potential cultural ‘mismatches’ in health service provision.

Austin Health 2010 CAC Forum Presentation

A case of Consumer Participation at Austin Health - a story of gradual achievement.

Austin Health Volunteer guides improving services for consumers.

Presented by Ania Sieracka at the Consumers Reforming Health Conference 2011.

Ballarat Health 2010 CAC Forum Presentation

Reviewing our services at Ballarat Health

Bendigo Health 2010 CAC Forum Presentation

CAC's journey into a more strategic dircetion at Bendigo Health

Communication and consultation with demetia patients

Exploring ways for staff to involve people with dementia in developing services.

Communities working for health and wellbeing: success stories from the Aboriginal community controlled health sector in Victoria

The philosophy of Aboriginal community control is particularly strong in Victoria and the stories collected here represent only a small portion of the positive outcomes achieved by Victorian Aboriginal community controlled health services.

Consumer Experiences: Graeme Roberts

In this article, based on an interview Graeme gave in 2007, he describes how the role of consumer advocate brings together a family history of being involved in both the health system and community work together and stresses the importance of the consumer voice being heard and being part of the decision making process.

Consumer Experiences: Iva Steinke

This article is based on an interview Iva gave late last year. In it, Iva speaks of her experiences as a consumer advocate and her hopes for consumer participation and the health system in the future.

Consumer Experiences: Sophy Athan

After providing long-term care for family members for many years, Sophy became a consumer advocate to be part of systemic change in the health sector. This article is based on an interview Sophy gave earlier this year. In it Sophy speaks of the benefits and difficulties of being involved in changing the health system and the support consumer advocates need to work effectively.

Consumer Experiences: Veronica Gribble

In 2007, Veronica Gribble gave an interview where she discussed her experiences of working on a steering committee for a project that aimed to set up a pilot scheme to facilitate the care of people with osteoarthritis who were on the waiting list for a hip and knee operation at public hospitals.

Consumer Involvement in Dementia Care Research, Policy and Program

Society is recognizing that people with dementia have worthwhile opinions on their care despite living with cognitive disabilities. In both the USA and the UK, independent organisations and governments are developing structures and processes to accommodate a more active role for people with dementia. Investigations summarized in this report provide valuable lessons for Australian practice and point to some issues yet to be resolved, such as representativeness, the empowerment of marginalized cultural groups and cost-benefit implications when resources are scares.

Consumer Participation and Patient Experience - The Eastern Health Strategy

Presented by Jo Gatehoouse at the Consumers Reforming Health Conference 2011.

Consumer experiences of participation in Community Advisory Committees

Presented at the Consumers Reforming Health Conference 2011.

Consumer self-rated outcome measures in mental health: A report to the Mental Health Branch

A comparative analysis of the consumer self-rating outcome measures now in use in mental health services throughout Australia, identifying international best practice, and making recommendations towards a uniform national approach.

Convenient Care: Consumers as Partners in Healthcare Decision-Making?

This is a video stream, with a panel discussing the issue of consumers as partners in healthcare and decision making. It is talking about health care in the US. Are health care consumers being empowered and positioned for success or manipulated and positioned for failure? How consistently and how fairly do we deliver quality care to all parts of our population?

Criteria for judging the quality of patient decision aids

This resource looks the standards, content and process of developing a patient decision aid

Disability Advocacy Resource Unit (DARU)

DARU is a statewide service run by and for people with disabilities
The DARU resources the Disability Advocacy sector and Disability Advocates

Do people want to be autonomous patients?

Preferred roles in treatment decision-making in several populations.

Eastern Health 2010 CAC Forum Presentation

Developing a new framework at Eastern Health for consumer, carer and community engagement.

Environmental factors that affect communication for patients with a communicative disability in acute hospital stroke units

Presented by robyn O'Halloran at the Consumers Reforming Health Conference 2011.

Evaluation of the effectiveness of the CAC to boards fo Victorian Public Health Services

Evaluation of the community advisory committees in Victoria conducted by Health Outcomes Internation for the Department of Human Services

Family involvement in the nursing home: Family-oriented practices and staff-family relationships

This study investigated family involvement and staff-family interactions in nursing homes with differing family orientations Twenty-four nursing homes were randomly selected to conduct semi structured telephone interviews with 177 family members.. Findings showed a wide range of involvement patterns that promoted family connectedness, maintenance of control, growth, and learning.

Frank Fisher: Consumer Advocate

Frank Fisher is a long-time member of Health Issues Centre. He was a consumer member of Health Issues Centre’s Board from February 1996 till October 2002. He has extensive experience as a consumer member of many community groups Frank strives to help people recognise that everything they do has social and environmental contexts of endless complexity, and that everything we think and do is based on interpretations of the world around us that are based on the culture in which we live. As this changes so does our insight. He was interviewed earlier this year by Dell Horey.

I Try and Smile, I Try and Be Cheery, I Try Not to Be Pushy. I Try to Say I’m Here for Help but I Leave Feeling… Worried’’: A Qualitative Study of Perceptions of Interactions with Health Professionals by Community- Based Older Adults with Chronic Pain. UK. 2014

This article presents the finding from a study about perceptions of older people affected by chronic pain and their interactions with health professionals. The study concludes that effective partnership is essential to assess and manage pain because of its subjective nature. Perception about age is an additional factor that can unnecessarily interfere with the effectiveness of this partnership.

Inside Radiology

Through the Quality Use of Diagnostic Imaging project work, the Royal Australian and New Zealand College of Radiologists has prepared a consumer information website on radiology procedures.

Managing Two Worlds Together: Study 3-The Experiences of Patients and Their Carers

Study 3-The Experiences of Patients and Their Carers is a first-hand report of rural Aboriginal patients and their carers.

Massachusetts Engaging Consumers as Partners in Care

Institute for Health Improvement Senior Vice President, Jim Conway, has long been an advocate for patients and their families, calling on providers, administrators, and health systems to include patients as vital partners in health care delivery. Recently, Conway was named chair of a new state-wide campaign in Massachusetts, the Partnership for Healthcare Excellence, whose core goal is partnering with patients. In this interview, Conway discusses how and why the group was formed, the goals of the new initiative, and how they align with the state’s health care reform effort.

Melbourne Health 2010 CAC Forum Presentation

A CAC project on accessing quality health information on the Internet.

NHS Institute for Innovative Improvement

Examples of experience-based design.

Narratives in a users' and carers' group: meanings and impact

The article describes how narratives are used to facilitate sharing experiences amongst carers.

National Mental Health Commission Workshop 2011: Report of key issues and themes

The National Mental Health Commission Workshop brought together Government, service providers, consumers and carers from around Australia, to discuss the establishment and priority focus for the new National Mental Health Commission, due to commence in January 2012. This report summarises what was discussed at the workshop.

National Standards for Mental Health Services 2010

This document outlines a revised set of mental health service standards which can be applied to all mental health services, including government, non-government and private sectors across Australia.

One Swallow Doth not a Summer Make: What Does it Mean to Consult Consumers? by Ian Roos

On 20 November 2007, Health Issues Centre held its Annual General Meeting where Ian Roos, Chair of Cancer Voices Victoria, gave a presentation that examined the present state of consumer participation in health services and how it needs to be improved. This article is developed from Ian’s presentation.

One in Five: Responding to the needs of people with a disbaility.

Presented by Noni Bourke at the Consumers Reforming Health Conference 2011.

Open disclosure of things that go wrong in health care

A booklet for patients beginning an open disclosure process. Produced by the Australian Commission on Safety and Quality in Healthcare.

Ottawa Personal Decision Guide

A general decision guide that can be used for any health or social decision developed by the Ottawa Hospital Research Institute

Pain is not invisible - A Consumer -Directed Research Project

Presneted by Coralie Wales at the Cosnumers Reformning Health Conference 2011.

Participate or Stagnate

In this article, Cheryl Sanderson describes how she became involved in consumer participation, and some of groups and activities she has been involved in. Cheryl also lists some of lessons she has learnt from being active in her community.

Participation in voluntary and community organisations in the United Kingdom and the influences on the self-management of long-term conditions

This article reports the findings of a study about participation in voluntary and community organisations (VCOs). People gave various reasons for joining groups. These included health and well-being, the need for social contact and pursuing a particular hobby. Barriers to participation included temporal and spatial barriers and those associated with group dynamics.

Pathways of cancer care that involve public & private cancer services: the Consumer experience Executive Summary

Health Issues Centre recently undertook a study examining consumers’ experiences of the consumers receiving cancer care, and in particular those who received both public and private care during their journey. This project was commissioned by North Eastern Metropolitan Integrated Cancer Services (NEMICS), which saw this as an important issue but where little information existed.

Pathways of cancer care that involve public and private cancer services- the consumer experience-final report

North Eastern Metropolitan Integrated Cancer Services (NEMICS) commissioned Health Issues Centre to undertake a study examining consumers’ experiences of the varying pathways of cancer care that involve public and private cancer services. It aimed to document these consumer experiences and perspectives, identify typical pathways that consumers take as they move between public and private care, strategies to improve coordination of care, and opportunities for improvement of the pathways.

Patient First Booklet

Patient First is a book to help consumers to advocate for themselves within the health system. It was developed by the Western Australia Council for Safety and Quality in Health Care, in collaboration with the Health Consumers’ Council and the Western Australia Department of Health.

Patient Safety at Johns Hopkins Medicine

Johns Hopkins Hospital is committed to excellence. A very important part of that excellence is our commitment to your safety. Patients who are more involved with their care in the hospital tend to do better and stay safer. By working together with physicians, nurses and other hospital staff, you can lower your risk of injury and make your hospital stay as safe as possible.

Patient and family centred care : The journey begins

Presented by Bernadette Brady at the Consumers Reforming Health Conference 2011.

Patient-centred care - ACSQHC Discussion Paper

Improving quality and saftey by focusing care on patients and consumers. Australian Commission on Safety and Quality in Health Care draft paper for public consultation.

Patient-centred care: Improving quality and safety through partnerships with patients and consumers

This paper includes information on the background, context, evidence and impetus for improving quality and safety by giving health care a more patient centred focus. The paper also provides practical examples, tools, tips and resources that can be used by Australian healthcare organisations to re-orient their systems to a more patient centred approach.

Patients as partners in managing chronic disease

Partnership is a prerequisite for effective and efficient health care
When acute disease was the primary cause of illness patients were generally inexperienced and passive recipients of medical care. Now that chronic disease has become the principal medical problem the patient must become a partner in the process, contributing at almost every decision or action level. This is not just because patients deserve to be partners in their own health care (which, of course, they do) but also because health care can be delivered more effectively and efficiently if patients are full partners in the process.

Peninsula Health 2010 CAC Forum Presentation

Peninsula Health values partnership

Perceptions of nurses, families, and residents in nursing homes concerning residents' needs

This study examined the congruence between needs identified as significant by older adults in comparison with caregivers (nurses) and elders' families. The study involved 44 patients, 94 nurses and 44 families from the Shoham Geriatric Center in Pardes Hanna, Israel. The findings are based on data gathered through questionnaires distributed at the nursing home. The analysis showed that in comparison with the residents and their families, the nurses attributed greater significance to values and personal outlook of the residents, provision of proficient physical care, skilled mental support, social life and institutional requirements. Families attributed the most significance to the provision of information and family involvement, and in contrast, according to the residents, the most important area was skilled mental/emotional support

Peter MacCallum 2010 CAC Forum Presentation

Peter MacCallum Cancer Centre

Real lives, Real jobs – Developing good practice guidelines for a sustainable consumer workforce in the mental health sector, through participatory research.

This report summarises the finding of research conducted on consumers working in mental health or related organisations. The report includes a series of recommendations to strengthen the mental health consumer workforce.

Roger Moulton presentation at Health Issues Centre Forum

Roger Moultan's presentation "What do consumers want?" presented at the "More than a standard: practical partnering with consumers" forum on 5 March 2013.

Roundtable Reports of Priorities of Rural Consumers who travel for Health Care

These reports are a summary of the roundtables conducted by Health Issues Centre in Gippsland and Loddon Mallee regions of Victoria.

Seeing the Person in the Patient

Joanna Goodrich and Jocelyn Cornwell

The King’s Fund 2008

This paper was intended primarily for hospital board members, clinicians and managers in hospitals to support their continuous efforts to improve patients’ experience. It may also of interest to patients and their representatives, commissioners and policy-makers. The paper is about how to improve the patients’ experience of care. The report introduces current debates and dilemmas in relation to patients’ experience of care in hospital, presents views on the factors that shape that experience, and assesses the evidence to support various interventions that are designed to address the problems

So You Have a Mental Illness

Produced by Our Consumer Place. This booklet provides an introduction to mental health from the persepctive of consumers.

Southern Health 2010 CAC Forum Presentation

Consumer Participation training for managers at Southern Health.

Straight from the source

A practical guide to consumer participation in the VIctorian alcohol and other drug sector. Written by the Association of Participating Service Users.

Strengthening the involvement of people with dementia- A resource for implementation

A new dementia strategy is being developed in the UK. As part of the dementia initiative development, two resources were produced on strengthening the involvement of people with dementia. People with dementia and their carers were involved in their development, and the documents are expected to be a key resource in improving dementia care in the UK. The document outlines the advantages of involving people with dementia in services.

The Consumer voice and experience must underpin and shape safety and quality in health care

Patient Safety and Quality of Care are key core areas in health care, both in Australia and worldwide. The collective consumer movement in Australia and its input to the safety and quality agenda is considered a world leader. So are its efforts and contributions in partnering to make health care safer and of a quality that meets all health consumers’ needs. Consumers have driven core issues such as standards and processes for openness and transparency, health rights, safer use of medicines, as well as better patient identification and wider access to services and continuity of care as people transfer from the care of one health professional to another. The experience and wisdom of consumers positively impacts on improvement in every dimension of health care quality.

The Importance of Carer Representation and Participation in Policy Development: A Carer’s Experience

Carers NSW receives requests from federal, state and local governments and agencies for carers to represent Carers NSW on various committees, consultations and forums. In response to this, Carers NSW has recently launched a pilot ‘best practice’ model of carer representation. The Carer Representation Program (CRP) enhances the advocacy work of Carers NSW. CRP representatives are provided with ongoing training and a support model that includes briefing and debriefing by policy staff. Carers NSW is piloting the program for one year with 13 carer representatives from a range of caring situations. This article describes Anna Maria Delloso’s experience of participating in the Carers NSW Carer Representation Program pilot.

The forgotten issue: Livelihood and life-threatening illness

The forgotten issue: Livelihood and life-threatening illness
Sandra Slatter

The needs of Victorian rural consumers who travel to Melbourne hospitals

This discussion paper was developed following concerns expressed by several metropolitan hospitals’ Community Advisory Committees (CAC) about the range of issues faced by rural consumers when using city hospitals. Health Issues Centre (HIC) proposed developing a discussion paper and the work was funded by the Statewide Quality Branch of the Victorian Department of Human Services (DHS).

The power of us. Marie Bismark presentation to Health Issues Centre Forum

Marie Bismark's presentation "The power of us: Why partnership matters" presented at the "More than a standard: practical partnering with consumers" forum, 5 March 2013.

The priorities of Victorian rural consumers who travel for healthcare- Gippsland Roundtable Summary

The priorities of Victorian rural consumers who travel for healthcare- Gippsland Roundtable Summary Traralgon, Victoria 4 December 2008
10.30 am - 4.00 pm
This summary is a documentation of the outcomes from a roundtable held in the Gippsland region. The aim of the roundtable was to discuss recommendations and actions raised in the HIC discussion paper The Needs of Victorian Rural Consumers Who Travel to Melbourne Hospitals.

The priorities of Victorian rural consumers who travel for healthcare- Loddon Mallee Roundtable Summary

The priorities of Victorian rural consumers who travel for healthcare- Loddon Mallee Roundtable Summary 24 April 2009.

This report brings together the reflections and ideas generated by consumers and health care workers from the Loddon Mallee region in Victoria and Melbourne who discussed ‘The needs of Victorian consumers who travel for healthcare’ and worked together to consider and define solutions and strategies to the key issues.

Theories of Medical Decision Making and Health: An Evidence-Based Approach

This article argues that as populations’ age and research that can reduce human suffering and death advances, it is essential to make research available to people in ways that they can use. Theories that illuminate underlying decision processes provide the essential bridge between research advances and health outcomes.

This is not about catharthis! My time in HDU.

An article by Merinda Epstein, first published in Our Consumer Place December 2011 newsletter.

Voices heard: Queer community advise health service

Presneted at the Consumers Reforming Health Conference 2011.

Was I still on the waiting list? A study about people waiting for public dental care

This report involves people who have been on the waiting list for public dental treatment at Dianella Community Health, Broadmeadows, for two years or more. It explores the experiences and perceptions of public dental patients and includes those who do not end up using the service. The aim of the study is to investigate factors (including health literacy) influencing decisions made by people on public dental waiting lists to attend dental clinics and explore people’s perceptions of their oral health status and general health status, and associated behaviours, while waiting for public dental care.

West Australia Health Consumer’s Council: Patient First Ambassador Project

The Patient First Ambassador project is a unique initiative to encourage health consumers in Western Australia (WA) to become more informed and involved in their health care and management, with the potential to reduce health related errors in the health system and result in less anxiety and stress, a quicker recovery time and less cost. The project, now in its second year, has volunteer consumers distribute the Patient First booklet direct to health consumers.

What Consumer say about consultation.

Health Issues Centre recently asked consumers on our HIC Consumer Register to reflect on their experience of being consulted. Here are some of their comments.

What I've Learnt as a Carer

Pat McLean has cared for her mum, who has advanced dementia, and more recently, her husband Gordon, who at 44, had a heart attack. Short-term in duration, but long-term in impact, Pat's situation reflects a type of care that is often underestimated. Although caring is often linked with chronic or long-term situations, short-term care can be very intense, often leaving the carer with little or no support and a life of unknowns. Pat's doctorate thesis focuses on the lives of women with partners who have had a heart attack and the lifelong pressures and anxieties they face.

What Mental Health Consumers and Carers Want Brochure

The National Mental Health Consumer & Carer Forum (NMHCCF) is the combined national voice for consumers and carers participating in the development of mental health policy and sector development in Australia

Why is he not smiling? Report

Dental Cost Study Phase 1
The Dental Costs Study (DCS) is the first comprehensive study of the comparative costs of public dental care in Victoria. It investigated the costs of delayed dental treatment for users of public dental health clinics among two groups of dental patients. One group was on the waiting list for more than two years (Group A) and the other group was on the waiting list for two to four months (Group B). The study also explored the impact of delayed dental treatment on health and social behaviours.