Resource produced by Aust & NZ Children's Haemotology/Oncollgy Group (ANZCHOG) and Paediatric Integrated Cancer Services (PICS)
Consumers’ research is research undertaken from a consumer perspective, by or with consumers. It is research that arises out of consumers’ needs.
This Manual has been developed with the aim of assisting consumers in carrying out research into health issues. The Manual addresses the key issues to be considered in undertaking any research project and offers advice about how consumers can overcome some of the difficulties they are likely to face during their research.
Author Sherry R Arnstein
Produced by the Australian government's National Health and Medical Research Unit. The model framework is intended for use by research funding bodies, organisations or teams who wish to develop consumer and community participation in their work.
Medical Care and Research Review.This article describes some of the tools currently available to help support better decisions and looks at some of the challenges to the implementation and dissemination of these efforts.
These six documents and reports produced by The Australian Institute of Health Policy Studies (AIHPS) for the project Consumer Engagement in Australian Health Policy: Investigating Current Approaches and Developing New Models for More Effective Consumer Participation
Department of Human Services are exploring strategies to build consumer participation in project governance (e.g. consumer representative on Quality Indicators Project Steering Committee) & obtain resident feedback on service developments.
Produced by the Consumer Health Forum of Australia.
A case of Consumer Participation at Austin Health - a story of gradual achievement.
This document has been prepared specially for people who directly provide
healthcare services to consumers, patients and client.
Reviewing our services at Ballarat Health
CAC's journey into a more strategic dircetion at Bendigo Health
This report presents a summary of Phase 1 of the Best Practice in Person-centred Health Care for Older Victorians project undertaken by the National Ageing Research Institute (NARI) on behalf of the Victorian Department of Human Services(DHS).
Health and medical information for consumers, quality assured by the Victorian government (Australia).
Beyond Compliance is the strategic framework for focusing on quality and safety in public sector residential aged care services. The approach draws together current and future initiatives in a manner that is sustainable and ensures residents and their carers’ choices are respected and quality of life is supported.
This checklist is a tool to assist health service boards of directors to review their safety and quality program against the elements of the policy. It may be used as a guide to the roles and responsibilities that boards and management have in facilitating effective implementation of the policy.
The handbook provide useful ideas about how to actively involve children and young people in services and policy making.
This presentation was given at the Health Issues Centre’s forum, Committed to Participation. There is often a perception that CACs and Health Organisations don't see eye-to-eye. This difference in perspective arises through a lack of adequate communication and misunderstandings of roles. This paper will examine the different mechanisms that need to be in place in order to improve working relationships between health proffessionals and the CAC.
Where to find the 'right' consumers? Several different approaches need to be made in order to attract consumers. Many CACs have problems with this, probably because they are limiting their recruitment techniques to one or two methods like using the local papers, and advertising within the health services (who would consider volunteering when they are in hospital for a procedure?). This session was presented at Health Issues Centre's forum, Committed to Particapation on 20 May 2008. It will present a range of different considerations and recruitment strategies.
Health Issues Centre supports the on-going development of 19 Victorian Community Advisory Committees (CACs) in Metropolitan and Regional Health Services. As part of this support, a number of learning and development sessions are held. Some of the findings of these sessions have been documented including this one on the role of CAC Chairs.
Health Issues Centre supports the on-going development of 19 Victorian Community Advisory Committees (CACs) in Metropolitan and Regional Health Services. As part of this support, a number of learning and development sessions are held. Some of the findings of these sessions have been documented including this one on good practice in consumer participation.
This presentation was given at the Health Issues Centre’s forum, Committed to Participation. A culture exists across health and welfare organisations, in Australia and across the world, of hospitals and other services being implicitly ‘patient centred’, while explicitly devaluing the contribution of community members, in ways that express themselves in financial terms.
Presneted by MyTien Lam at the Consumers Reforming Health Conference 2011.
This report details the findings from consultations with 57 consumers and 5 Indigenous community workers undertaken by Health Issues Centre (HIC) for CanNET Victoria. It captures the voices and experiences of consumers, carers and community members affected by cancer from northern metropolitan region of Melbourne and Hume regional area.
One of three resources developed to support consumer participation within Cancer Australia.
Presented by Elena Katrakis on behalf of Carers NSW at the Consumers Reforming Health Conference, July 2011.
Christine Durham's presentation on "Making the best of health issues by making connections and building bridges." Presented at the Health Issues Centre Forum "More than a standard: practical partnering with consumers". 5 March 2013.
Prsented by Catherine Joyce at the Consumers Reforming Health Conference 2011.
Folder 1- Contains documents
About Community Advisory Committees (CAC)
Roles and Responsibilities
Folder 10- this folder contains resources for Resource Officers who support the Community Advisory Committee and are responsible for consumer participation in their health service
Folder 11- This folder contains other support information in relation to consumer participation and the Community Advisory Committee
Folder 2 - this folder contains documents about Community Participation Plans
How to Develop a Community Participation Plan
Examples of Community Participation Plan
Folder 3- This folder contains a range of documents on Consumer Participation
Folder 4- This folder contains good practice examples form both the health and non health sector
Folder 5- This folder contains government documents pertaining to CALD, Community Advisory Committees, Consumer Participation, EQUI and Quality of Care Reports
Folder 6- Ths folder contains information about Health Issues Centre
Folder 7- this folder contains documents about the Resource Officers Network Meetings
Folder 8- This folder contains documents pertaining to reporting requirements to the Victorian Department of Health
Folder 9-this folder contains resources for CAC Members
This framework provides health service managers and service providers within Central Northern Adelaide Health Service with an overarching structure for the development of local strategies and action plans for community and consumer participation and describes the principles in which we will operate
Published in the Australian Journal of Primary Health.
Presneted by Stephanie Miller at the Consumers Reforming Health Conference 2011.
The Victorian Clinical governance policy framework is the Department of Health’s policy on clinical governance. This checklist is a tool to assist consumers to understand how they can participate in safety and quality activities as outlined in the policy. It may be used as a guide to the roles and responsibilities that consumers have in facilitating effective implementation of the policy.
Presented by David Owen at the Consumers Reforming Health Conference 2011.
Presented by Prof Paul Ward at the Consumers Reforming Health Conference, July 2011.
Presented by Jo Gatehoouse at the Consumers Reforming Health Conference 2011.
Presented by Kate Davies at the Consumers Reforming Health Conference 2011.
Presented at the Consumers Reforming Health Conference 2011.
Presneted by Carla Saunders at the Consumers Reforming Health Conference 2011.
This literature review identifies issues affecting consumer participation in primary care, examines how these differ from those relevant to other health care sectors, and outlines lessons learned to date.
Discussion paper presented as part of the ISP Seminar Series May 2011
This Training Resource is a set of materials to help health care and consumer organisations build their own workshops. The aim of the Training is to help organisations develop a service that is more responsive to consumers' needs, enhance service quality and improve consumers' health outcomes. This Training Resource has two sections: this guide and a set of four training modules.The Guide gives an overview of the Resource, including information for organisations/services and information for trainers. The four training modules are also available in this web site and include materials for trainers and handouts for participants.
The forum consisted of workshops on a range of topics including consumer participation as activism, consumer participation indicators, and guidelines, protocols and networks needed to support consumer participation. The forum explored the meaning of consumer participation and why it is important. Key themes emerging from the forum are also summarised.
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.
Consumers Step Up
Health Issues Centre has been funded by the Victorian Department of Human Services to undertake a ‘Study on consumer perspectives on potential workforce changes’
Project Background and Outline
The consumer voice has been largely absent from the workforce debates and decision-making about new models of service provision and changing professional and para-professional roles. Health care provision is changing in Australia, driven by various well-known pressures. Workforce issues are a crucial component of this changing picture. Crucial decisions about new forms of service provision and workforce roles are being made, many by service providers on pragmatic grounds, rather than necessarily driven by evidence-based policy decisions. Such changes are occurring especially in rural areas where workforce/skill shortages are most acute.
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?
Produced by the California Healthcare Foundation.This report outlines possible ways to overcome the problems that some consumers faced when using decision aids, including the issue of low literacy and the context where the decision making process takes place.
This resource looks the standards, content and process of developing a patient decision aid
21-22 September 2009
Victoria University Conference Centre, Melbourne
Evaluation is an important component of any health care program. Assessing how well and in what areas a program has succeeded, helps to establish its value and guide future program development. The National Resource Centre for Consumer Participation is increasingly asked for advice on how to evaluate consumer participation activities, and for examples of performance and outcome indicators. This article draws heavily on the theory of participation, and where possible, demonstrates the theory with practice examples in an effort to encourage progress toward the development of indicators for the evaluation of consumer and community participation activities.
DARU is a statewide service run by and for people with disabilities
The DARU resources the Disability Advocacy sector and Disability Advocates
Preferred roles in treatment decision-making in several populations.
The Australian Council on Healthcare Standards: EQuIP5 Standards and Criteria
Developing a new framework at Eastern Health for consumer, carer and community engagement.
This project involved Health Issues Centre working with VMIAC to increase their capacity to provide ongoing education and training opportunities to the mental health consumers it supports. This involved determining the knowledge mental health consumers need to better negotiate with health services and participate in their own care and systematic change.
Engaging Consumers in discussion about Australian health policy: Emerging key themes
This report documents the proceedings of the forum which includes guest speakers’ presentations, strategies for engaging refugee and migrant young people around mental health issues and improving service delivery, as well as follow-up actions to be explored and developed by Action on Disability within Ethnic Communities (ADEC) and Center for Multicultural Youth (CMY).
The Victorian Department of Human Services launched A Cancer Services Framework for Victoria in November 2003. This Framework outlines an integrated model for metropolitan and regional cancer services, and aims to reduce unacceptable variations in care across Victoria. As part of the work to implement the Cancer Services Framework, the Ministerial Taskforce for Cancer commissioned Health Issues Centre to develop a strategy for effective participation of consumers, carers and community members in the cancer service reforms. This article provides a summary of the process to develop the strategy and key lessons learnt through consultations with consumers, carers and service providers.
This article describes a process to establish community-based participatory research between academics, researchers and mental health consumers in the USA. The article describes the lessons learned: changing attitudes; sharing staff; expecting obstacles and formalizing solutions;
monitoring and evaluating; adapting and adjusting; and taking advantage of emerging opportunities. Some of these lessons were previously known principles that were modified as the result of the CBPR process, while some lessons derived directly from the interactive process of forming the
PResneted by Michael Janssen at the Consumers Reforming Health conference 2011.
This presentation was given at the Health Issues Centre’s forum, Committed to Participation. This powerpoint presentation shows how an independent evaluation of Victorian CACs examined the processes by which CACs operate, as well as the immediate and long-term outcomes of the CACs.
Evaluation of the community advisory committees in Victoria conducted by Health Outcomes Internation for the Department of Human Services
A comparative quasi-experimental research study assessed the performance of a generic participation method (i.e., a 1-day face-to-face, public consultation meeting). The findings demonstrate that a generic public participation method can be successfully implemented if practitioners pay careful attention to the types of issues and decisions they seek public input for, and if sufficient organizational resources and commitment to the goals of the public participation process are provided.
Public involvement in research is founded on the core principle that people who are affected by research have a right to have a say in what and
how research is undertaken. This report summarises the findings from a literature review that aimed to increase ourknowledge of the evidence of the impact of public involvement on health and social care research.
Over the last ten years, the area of mental health care has seen the gradual evolution of professional development practices that involve consumers and carers as key teachers. In acknowledging the development of the consumer movement, it is now relatively common for mental health services as well as teaching organisations to invite or employ consumers (in particular) to become teaching partners in aspects of professional education. This article looks at the issues surrounding consumers and carers using their personal stories in the teaching context.
This article contests the notion of ‘training’ as a means to communicate knowledge and skills to consumers. It argues the need to move away from formal notions of training towards an involvement that is facilitated, supported with information and connected to ways that assist participation with confidence. Findings from a study conducted with active breast health consumers include how participants explain their learning needs for participation as different to classical notions of communicating knowledge
This article demonstrates the need for health services to employ a coordinator who can support, engage, navigate and advocate for community representative’s participation and influence in health service policy and practice.
Preseneted by Kaye Ervin at the Consumers Reforming Health Conference 2011.
Increasingly, the potential role of consumers in developing effective and appropriate health care services in being recognised. Evidence is also emerging to support the wisdom of this participation. Despite the increasing amount of work being done to enhance consumer participation in the health system, many consumer groups are excluded from involvement in mainstream processes for seeking such input. This article looks at a project was undertaken by the National Resource Centre for Consumer Participation in Health. The projects draws together existing information from the literature about participation of previously excluded consumer groups and to highlight existing barriers to the participation of these ‘marginalised’ groups of consumers.
Looking for a Consumer Organisation?
This directory compiled by the Victorian Quality Council allows health services to search for consumer organisations with members willing to become involved in quality improvement. Each entry includes contact details for the organisation along with its aims and activities. Entries are listed both alphabetically by name and by category. Other features of the site include lists of other directories, peak bodies and links to useful websites.
This document sets an agenda for collaborative government action in mental health for five years from 2009, offers a framework to develop a system of care that is able to intervene early and provide integrated services across health and social domains, and provides guidance to governments in considering future funding priorities for mental health.
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.
Presented by Hans Lofgren at the Consumers Reforming Health Conference 2011.
This is a kit for people interested in being involved in Health Issues Centre’s Consumer Nominee Program. It includes information, advice, tips and resources to encourage people to get involved.
This resource is specially designed to assist health professionals and organisations to include consumers on advisory or other committees.
This guide is for people who want to be actively involved in health research, not as “subjects” but as consultants, partners and leaders in research commissioning and research work.
These eight Fact sheets complement the Consumers' Health Forum of Australia's 'Guide for consumer representatives' which is also available in this web site.
Published by the Consumer Health Forum.
Presented by Kalus Baur at the Consumers Refroming Health Conference 2011.
The Health Care Consumers' Association provides a voice for consumers on local health issues by working with health services to achieve services that are responsive, respectful, accessible and affordable to all; encouraging direct consumer involvement in health decision making; and lobbying and advocating on behalf of ACT health consumers.
The alliance is a not-for-profit, peak community organization for health consumers using heath services in South Australia. The Alliance aims to taken and active role in the development of health policy and supports community members to achieve beneficial changes in the health system.
The Health Consumers' Council is an independent community-based organisation, representing the consumers' 'voice' in health policy, planning, research and service delivery. The Council advocates on behalf of consumers to government, doctors, other health professionals, hospitals and the wider health system.
This edition of Health Issues focuses on women’s health at an important time in the evolution of women’s equality in Australia. With the early signs of a changed national public policy environment following the 2007 election of a federal Labor government, it is important to be reminded of our shared history, as Gwendolyn Gray does in her analysis. She provides a clear understanding that change and making governments responsive to women’s perspectives and concerns depends on being very close to the engines of power and having resources to undertake research, analysis and advocacy both inside and outside government.
Presneted by Kate Gilbert at the Consumers Reforming Health Conference 2011.
A study conducted at Flinders Medical Centre in South Australia examined how people using the Centre’s services, and representatives of consumer/community organisations, preferred to be involved in improving the quality of services as well as identifying some of the issues which may inhibit or enhance consumer participation. The study was conducted for the purpose of informing policy, planning and infrastructure development for consumer participation. This article presents the findings of the study related to the issues that may inhibit or enhance consumer participation and how these findings have influenced developments at the hospital.
This presentation from the Committed to Participation Forum examines how the Royal Victorian Eye and Ear Hospital strives for effective two-way communication between the Community Advisory Committee and RVEEH and continuously works to facilitate the relationship between the Board, CAC and staff.
INVOLVE is an advisory group, funded by the United Kingdom's Department of Health to promote and support active public involvement in the National Health Service, public health and social care research
Information to guide implementation of the national standards for mental health services by public mental health services and private hospitals.
The guide is for people working in health care organisations who want to increase consumer participation in the planning, management and evaluation of those organisations.
Patient decision aids help patients to make shared decisions with their doctors about treatment. Patient preference reports summarise the patients’ clinical needs and decisions and help to improve communication between patients and their doctors. The article includes an example of a patient preference report used in Canada.
A non-profit organization advancing research, policy, and clinical models that assure patients are fully informed and involved in decisions that affect their health and well-being.
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.
This reports the findings of interviews Health Issues Centre conducted with consumers who had recieved treatment at the Austin for colorectal cancer and their carers. Questions asked explored the ups and downs of the experience; satisfaction with the service provided; clarity of explanations given during diagnosis, procedures and treatment; and whether consumers sought information from other sources.
Presented by Agnes Vitry at the Consumers Reforming Health conference 2011.
Presented by Diane Lowe at the Consumers Refroming Health Conference 2011.
Presented by michelle Marven at the Consumers Reforming Health Conference 2011.
Health services are increasingly recognising the benefits of actively involving consumers in service planning, policy development and program evaluation. One of the most common ways consumers participate at this level is through membership of steering committees, reference groups and advisory groups. To help health services successfully involve consumers in such committees and groups, this article outlines five points for service providers to consider.
This booklet is designed for researchers with no previous experience of involving members of the public, and for people who use services, as active partners in research.It is an introductory document which contains
references for further reading on the subject of involvement.
This United Kingdom-based website promotes partnerships between patients and professionals in order to identify and prioritise the unanswered health treatment questions that they agree are the most important. This helps to ensure that funders of health research are aware of what matters to patients and clinicians. The website links to a database which identifies the health treatment uncertainties.
This is a list of acronyms and terms designed to assist consumers, carers and community members as well as health professionals to navigate the complex language of the health sector.
This Joint Position Statement on Cultural Diversity Consumer Participation was created by Health Issuse Centre and Centre for Culture Ethnicity and Health. It describes how the two organisations plan to work together to support health services to develop consumer participation strategies that engage the diverse communities they serve.
Presented by Bob Neumayer at the Consumers Reforming Health Conference 2011.
This resource looks at how culturally and linguistically diverse (CALD) consumers use language services and how effective they find them. Research by the Centre for Ethnicity and Health found that consumers repeatedly described excessive waiting times, overstretched services and varying quality. In some cases though, consumers did not have the information about where and how to access existing language services. The report shows that many CALD consumers will not be able to meaningfully participate in their own health care until essential communication services are improved.
This table sets out the different levels of consumer participation, gives examples of each and describes the characteristics of each level.
This directory compiled by the Victorian Quality Council allows health services to search for consumer organisations with members willing to become involved in quality improvement. Each entry includes contact details for the organisation along with its aims and activities. Entries are listed both alphabetically by name and by category. Other features of the site include lists of other directories, peak bodies and links to useful websites.
This resource outlines an approach to focus groups which involves using bilingual facilitators with a group of participation with a common language and cultural background.
This resource guide was developed by Health Issues Centre to assist memebers of the Community Advisory Committees (CACs) in Victoria's Public Health Services to develop their understanding of quality and safety in health services so CAC s can provide advice on how community participation can contribute effectively to quality and safety activities.
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.
Presented by Sue Robins at the Consumers Refroming Health Conference 2011.
A CAC project on accessing quality health information on the Internet.
This presentation was given at the Health Issues Centre’s forum, Committed to Participation. Over the past two years, the Melbourne Health CAC has been working towards its long-term goal of integrating consumer and community participation into the organisation’s strategic and operational plans and performance indicators. As a result, consumers, carers and the community now participate in a range of quality improvement activities across Melbourne Health including strategic planning and Root Cause Analysis reviews. The inclusion of consumer participation in organisational processes has ensured a systematic and sustainable approach in these areas.
This report details the results of a national survey undertaken by the MHCA and beyondblue: the national depression initiative in 2011, which captures the experiences of Australians with lived experience of mental illness in applying for, or making claims against insurance products.
This is a 2010 updated Cochrane review from 2006. There is moderate quality evidence that involving consumers in the development of patient information material results in material that is more relevant, readable and understandable to patients, without affecting their anxiety. This 'consumer-informed' material can also improve patients' knowledge. There is low quality evidence that using consumer interviewers instead of staff interviewers in satisfaction surveys can have a small influence on the survey results. There is low quality evidence that an informed consent document developed with consumer input (potential trial participants) may have little if any impact on understanding compared to a consent document developed by trial investigators only. There is very low quality evidence that telephone discussions and face-to-face group meetings engage consumers better than mailed surveys in order to set priorities for community health goals. They also result in different priorities being set for these goals.
Presented by Nicola Bruce at the Consumers Reforming Health Conference 2011.
This is a literature review about consumer and clinicians participation in policy development. It was conducted by Health Issues Centre for the Sax Institute NSW.
Presentations from the forum 5 March 2013.
Presented by Judy Gregory at the Consumers Reforming Health Conference 2011.
Centre for Cultural Diversity in Ageing.This Handbook is a useful tool for residential aged care providers as it helps to compile and publish resident handbooks in multiple languages. It’s a useful tool to provide information to residents and their families in their own language. Handbooks can be published in: English, Arabic, Chinese (Mandarin), Croatian, Greek, Italian, Macedonian, Maltese, Polish, Russian, Serbian, Spanish, Turkish and Vietnamese.
This guide from the National Health and Medical Research Council argues that for all Australians to realise their right to health care, cultural competency must be the core business at every level of the health system. This guide aims to help policy makers and managers to develop and implement culturally competent policy and planning in relation to CALD communities.
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.
The Alliance works to improve the health of Australians in rural and remote areas. It represents both health consumers and service providers, and believes that all Australians should have equitable access to appropriate health services, regardless of where they live.
The Commission developed the National Safety and Quality Health Service (NSQHS) Standards to drive the implementation and use of safety and quality systems and improve the quality of health service provision in Australia.
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.
Noni Bourke's presentation "Moving to a partnership culture" from the "More than a standard: practical partnering with consumers" forum, 5 March 2013.
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.
This Unit is a partnership between Aboriginal and non-Aboriginal people which affirms Aboriginal knowledge, values and processes in all of its work. Onemda uses its extensive experience in Aboriginal health care, health service and policy to undertake research, teaching and Koori community development.
This article describes how the Model Framework for Consumer and Community Participation in Health and Medical Research developed by the Consumers’ Health Forum of Australia and the National Health and Medical Research Council was used in practice during the Consumer Involvement in Research Project conducted by the Cancer Council of NSW.
This tool is designed to assist organization to determine their commitment and capacity regarding consumer and community participation and to identify areas of practice that could benefit from consumer participation.
The Victorian Clinical governance policy framework is the Department of Health’s policy on clinical governance. This checklist is a tool to assist organisations to review their operational capacity against the generic structural and process elements essential to achieving effective clinical governance.
This link includes: What are patient decision aids?
How can I find decision aids and learn about their quality?
A to Z Inventory: allows you to search for decision aids on particular health topics.
Ottawa Personal Decision Guide: a general decision guide that can be used for any health or social decision.
How do I develop a decision aid?
Development Toolkit: provides information for developers and researchers interested in producing decision aids.
How can I implement decision aids in clinical practice?
Implementation Toolkit: provides tools and training for incorporating decision support in practice centres.
A general decision guide that can be used for any health or social decision developed by the Ottawa Hospital Research Institute
Four years ago, the Victorian government established the Metropolitan Health Services, and to ensure that Victorian public hospitals were responsive to community needs, legislation was changed to require each Metropolitan Health Service to establish a Community Advisory Committee. This article describes how Community Advisory Committees have developed over this period and an Inquiry held to examine the role of Community Advisory Committees in Metropolitan Health Services.
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 and the social determinates of Health: citizen action for social equity- Key note address from the 2009 Participate in Health Conference Melbourne September 2009- Professor Fran Baum
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.
Tall Girls Inc. is a small self-help consumer health group representing women who, as tall girls, were treated with synthetic oestrogen to stunt their growth. This article describes how the group formed and how the women have been able to publicise the issues in Australia and overseas. Tall Girls has also been involved in a research study looking at the long-term health outcomes of the treatment.
Prsented by Karen Luxford at the Consumers Reforming Health Conference 2011.
This article describes the findings of a consumer-based research project that suggests consumer consultant projects have been very effective agents for innovation and change in Victoria's Area Mental Health Services.
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.
Presented by Neil Turton-Lane at the Consumers Reforming Health Conference 2011.
The Ottawa Health Research Institute has an extensive collection of 'Patient Decision Aids' designed to help consumers make difficult healthcare decisions and to assist health providers in supporting those consumers. Each decision aid has been assessed against at least minimum approved standards.
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.
An interesting United Kingdom example of how consumers are influencing the National Health Service is Patient Opinion, which allows people to give anonymous online comments about their experiences of hospital services. Other consumers can then read these. The site began in 2005 and is funded by hospitals who subscribe to access the information and analyses of the data.
This article will be highly relevant to people undertaking research, and for people working in quality and safety contexts. Table 4 provides an analysis of medical errors and the potential roles for patients in preventing such errors.
Research shows that involving patients in decisions about their health care and treatment improves outcomes and patient satisfaction. This article explores the meaning of patient partnership and shared decision making, and discusses the contrast between these two concepts and consumerism.
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.
Surveying hospital consumers is a key method hospitals use to understand consumers’ views on the quality of care they received. One of the most commonly used surveying tools is patient satisfaction surveys. This article presents the findings of recent research conducted by the National Resource Centre for Consumer Participation in Health that examined the key features of patient satisfaction surveys in Australian public hospitals.
Published in the Journal of Clinical Nursing.
A Review of the Evidence looks at the costs and benefits, in terms of health care quality, of various United Kingdom strategies to involve patients and the public. These include patient involvement in safety, improving the care experience and health decision-making, and managing one's own health care more effectively. Patient-Focused Interventions: A Review of the Evidence looks at the costs and benefits, in terms of health care quality, of various United Kingdom strategies
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.
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.
Health Issues Centre January 2014
This presentation has delivered at Health Issues Centre's forum, Committed to Participation on 20 May 2008. It presents recent research into the paying of participants in Australian health research and evaluation, and draw comparisons to current practices by health services regarding payment of consumers on Community Advisory Committees.
Peninsula Health values partnership
available in 33 languages, it was formulated and endorsed by 1453 participants from 92 countries at the People's Health Assembly in December 2000 in Bangladesh.
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
Issues for the Australian Private Hospital Sector
This article describes how a group of consumers created a consumer-driven performance report for a private health service.
The toolkit for health service provider.
Peter MacCallum Cancer Centre
Analysis of data from patient surveys in the United Kingdom, Germany, Australia, New Zealand, Canada and the USA concluded that none of them excel in promoting patient engagement. However Australia ranked comparatively highly on quality of doctor-patient communication and access to medical records. But Australian patients were the least likely to have received systemic reminders about preventive procedures, and comparatively few had information about their surgeon's track record.
Consumer participation is not just about consumers acquiring skills and tools. This project from the Picker Institute(UK)looks at the extent to which doctors are being trained to work in partnership with patients, and what skills are still needed.
The South West Primary Care Partnership's Consumer Access to Service Information Project resulted in three consumer-designed Service Information Hubs opened their doors, two in Warrnambool and one in Port Fairy. The project has seen consumers leading the project through every phase. This article reviews the methods and models of consumer participation used within the project, the use of community development strategies as a facilitator between community and bureaucracy within the health reform context, and the challenges the project faces.
In 2008, the Department of Human Services (DHS) made it a requirement that all stand-alone community health centres produce a Quality of Care Report. The purpose of this report is to describe quality and safety systems, processes, and outcomes of the health service to consumers and the local community. DHS advised that health services should consult with consumers, carers and community members about the content of the report. Inner South Community Health Service (ISCHS) decided to set up a short-term working group, involving consumers and staff, to produce this report. This article documents some lessons learnt and some of the challenges associated with the working group.
The workshop were designed to provide policy perspectives on consumer participation in mental health research, background information about stakeholder views about benefits, barriers and priorities for action to promote consumer participation in research and models for active consumer involvement in research.
In 1999, Austin Health conducted an audit that revealed inadequacies in written consumer information in a range of areas including pre-operative and discharge information. In 2000, the first stage of the Patient Education Material Project (PEP) designed a process and system of best practice for the development of consumer education materials to be implemented at Austin Health. The second stage (PEP2) was undertaken in 2002 to investigate the effects on English, Greek and Italian-speaking consumers ’ experience of receiving quality education materials about colorectal cancer surgery. The project consists of four phases: evaluation of the existing consumer education materials; development of a education package; intervention; and evaluation of the intervention. This article describes the consumers’ experience of receiving the existing consumer education in the project’s first phase.
Public engagement (Part I and II):– engaging the public in healthcare policy: why do it? And what are the challenges?
This article explains briefly the rationale for engaging the public in decision making process and the development of health care policy. Part II of this series discusses how engage the public in decision-making processes and describes ‘deliberative processes’
Public engagement (Part III): how is it done? How can we tell if it’s effective?
This article analyses how public engagement is done and how can it be evaluated.
Presented by Paul Burton at the Consumers Reforming Health Conference 2011.
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.
This project of the Multicultural Mental Health Australia, National Ethic Disability Alliance, and the Australian Mental Health Consumer Network produced a report that presents findings from a series of national consultations with Cultural and Linguistically Diverse mental health consumers about their needs, concerns and aspirations, and includes a CALD consumer service provider checklist.
The purpose of Recognising and supporting care relationships for older Victorians Action Plan 2006–2009 is to improve recognition of, and support for, care relationships for older Victorians through policy and service development and delivery.
Published in the Journal of Consumer Studies.
Forum Report from July 2010.
This is an interview with Ron Parker, Community Advisory Committee member at the Austin and Repatriation Medical Centre (ARMC) in Melbourne conducted in March 2002. It looks at the formation and achievements of the new Community Advisory Committee (CAC) in its first twelve months. The interview was conducted by Claire Kelly and Helena Maher from Health Issues Centre.
The Resource Pack was designed for health consumers or community members wanting to become involved in the work of research organisations and for researchers wanting to include consumers and community members in their research.
Presented by Anee Mckenzie at the Consumers Reforming Health Conference 2011.
This guide was developed in the United Kingdom by the Department of Health for local health and social care organisation that involve community members in the development and delivery of their services. It aims to set out the principles of best practice in the payment and reimbursement of community members who contribute to services; roles and responsibilities for health services and community members; and the implications of payment and reimbursement on community members who receive a government benefits.
Roger Moultan's presentation "What do consumers want?" presented at the "More than a standard: practical partnering with consumers" forum on 5 March 2013.
These reports are a summary of the roundtables conducted by Health Issues Centre in Gippsland and Loddon Mallee regions of Victoria.
The Patient and Carer Network of the RCP includes patients, carers and members of the community of diverse backgrounds and across geographic regions. These Network members undertake a variety of activities to ensure that their views are integrated in the work of the College. Many participate on College Boards, committees and working parties.
This report presents the ideas, preferences and areas of consensus which emerged throughout the national scoping project for a new peak national mental health consumer organisation. It outlines an approach to organisational development which foreshadows a strong, viable and accountable organisation based on good governance principles and reflecting the need for an organisation which can deliver for and with mental health consumers nationwide.
This report is intended as a practical resource for local councils wishing to engage their communities in decision making and planning. The focus is on how to broaden the range of people represented in council processes, especially those who are reluctant to participate in traditional consultation methods
Consumer Participation training for managers at Southern Health.
Southern Health received BSEP funding for a 12 month consumer participation project, to establish effective and sustainable consumer participation for Southern Health breast services. Since the project status ended, breast services consumer support has been provided by the Monash BreastScreen Senior Community Education worker.
Southern Health established a Community Advisory Committee to provide advice to the Board and to ensure consumers, carers and the broader community play a participatory role in planning, service delivery and policy development. This article outlines the Committee's progress in integrating consumer and community participation as core business of the health service, with a particular emphasis on the development of a Community Participation Plan.
A practical guide to consumer participation in the VIctorian alcohol and other drug sector. Written by the Association of Participating Service Users.
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.
Sustain advocates food and agriculture policies and practices that enhance the health and welfare of people and animals, improve the working and living environment, enrich society and culture and promote equity. Via its Community Mapping Project, Sustain's Food Poverty Network aims to enable people to understand their local food economies and develop solutions to the problems they face in obtaining a healthy diet for themselves and their families. The project emphasises participation, action and ownership at every stage of the process by all people involved
This article describes a consultation with dental health service users by the Royal Dental Hospital Melbourne. The 2000 project asked consumers for their thoughts on the design of the then new hospital, their experiences of the services, and how best to consult consumers in the future.
The Framework specifies three core principles for safe and high quality care. These are that care is consumer centred, driven by information, and organised for safety.
Presented by Dr Susan B. Frampton at the Consumers Reforming Health Conference, July 2011.
This article presents four case studies of Bedside teaching encounters (BTE) involving clinicians, medical students, and patients. The case studies show how patients sometimes participated as team members, even taking the role of director, but more commonly they were positioned in less active roles: as audience, nonperson, and prop.
The IAP2’s toolkit contains a variety of methods for sharing information including information kiosks, newspaper inserts, hot lines and many more. The table also lists potential advantages and disadvantaged of each method.
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.
he Priorities of Victorian rural consumers who travel for health care-
A summary report of seven key priorities
towards ‘whole-of-journey’ supportive and coordinated care
Presented by Alice Irving at the Consumers Reforming Health Conference 2011.
Presented by Jocelyn Cornwall at the Consumers Reforming Health Conference in Melbourne, July 2011.
Presented by Nikos Thomacos at the Consumer Reforming Health Conference, July 2011.
Published in the International Journal for Quality in Health Care 2012.
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 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.
Presented by Janette Collier at the Consumers Reforming Health Conference 2011.
This article argues that there needs to be more clarity about the role of consumer representatives not only by staff but by the consumers themselves.
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 article describes a pilot of an audit of one form of feedback-complaints- in the Victorian breast cancer screening program. The core activity of the audit was the use of consumer groups to review individual consumers' complaints.
The article provides empirical evidence that the ways American consumers once thought about health have changed and multiplied in this new era of competing health paradigms. The study demonstrates that in the current environment consumers think about health and health care in a multiplicity of very different ways, leading to the conclusion that we should not classify health care consumers as either conventional or alternative.
This guide is published by the Victorian Department of Human Services and outlines strategies to help plan and deliver culturally appropriate human services. Each strategy is illustrated by examples of good practice and has a section on where to go for more information.
The Victorian Department of Human Services supports a range of initiatives which promote and support consumer involvement in decision-making about their own treatment and care, in service development and quality improvement, and more broadly, in health policy developments.
This framework is the Department of Health’s policy on clinical governance.
Presneted at the Consumers Reforming Health Conference 2011.
This framework was developed to assist WA Health and professionals working in the WA health system to implement meaningful and effective consumer, carer and community engagement strategies. The framework covers engagement at four levels: individual patient interaction; department, program or service level; area health level; and WA Health level. A number of tools aimed at helping services implement the framework are included.
How included do carers feel when supporting someone while in hospital and after discharge? The growing practice to minimise hospital stays led Carers Queensland to explore carer experiences in dealing with hospital staff and managing their caring role post-discharge. This article reports the findings of a statewide study and implications for improved practices.
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.
The need for reform in health care is not new. What is new is the urgent imperative for reform. Consumers have an opportunity to join the reform discussions as the National Health and Hospitals Reform Commission makes its deliberations and recommendations.
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.
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
IAPO's survey on perceptions of healthcare among patients' organisation members in Canada, Nigeria, and 10 European Union member states found strongly shared views. Recurring themes were the need for timely access to the best treatment and information, and belief in patients' rights to participate in decisions about their health care and in health care policy making.
Barriers and enablers to person centred practice in this literature review. This literature review also discusses barriers specific to caring people with chronic disease, mental health, dementia, palliative care and neurological disorders.
These are important to know about so that you can consider them when you are action planning.
Doctors and nurses should give their patients a bigger say in their own care, argue Dr Peter Douglas Collins and Natalie Grazin
This is a brief summary of a paper developed during the AHCRA two-day workshop in Adelaide on 16-17 November 2005. It looks at the need for dialogue with citizens and consumers about the future of the Australian health system.
This research report focuses on the experience of rural women with breast cancer and implications for the provision of health services is an example of participatory research. It was designed to explore the effects of breast cancer and breast cancer treatment on rural women. 20 women in the Hume region of Victoria who had been diagnosed and treated for breast cancer were asked to reflect on the effect of breast cancer on their lives, and on the nature and quality of the services they received. They spoke about what was helpful to them and gave their views on how services could be improved.