Victorian Consumers Participate in Health

Key Resources

Participation Needs Information!
Consumers can participate more effectively in their own health care and in advocating for others if they are well-informed. The resources below are good places to start.

Health Literacy Improvement
www.health.gov/communication/literacy/default.htm
Health literacy is the capacity to obtain and understand the basic health information and services needed to make the best health decision. Low health literacy will therefore be likely to contribute to poorer health outcomes for consumers. This USA website has evidence and tools that can be used by consumers and health providers.

HealthInsite
www.healthinsite.gov.au/
This is is a Commonwealth Government initiative which has up-to-date quality health information.

Health on the Internet
www.barwonpcp.org.au/health_information.shtml
The Barwon Primary Care Forum includes a guide to health information on the Internet, with links to areas of child health and to material in languages other than English.

Cochrane Collaboration
www.cochrane.org
Many claims are made about health and medicine, but how do we know what really works? The Cochrane Collaboration is an international, independent non-profit organisation which produces systematic reviews of the evidence. The reviews are published online as part of the Cochrane Library.

Informed Health Online
www.informedhealthonline.org/index.en.html
This is another evidence-based health information site is from the German Institute for Quality and Efficiency in Health Care. Readers can rate the usefulness of each piece of information and comment on it. There are other interesting interactive aspects to the site, which was developed with consumer input.

Patient Decision Aids
http://decisionaid.ohri.ca/index.html
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.

Childbirth Connection
www.childbirthconnection.org
This USA site promotes safe, effective and satisfying evidence-based maternity care. It aims to help women and health professionals make informed maternity care decisions.

MedlinePlus
http://medlineplus.gov
This is an initiative from the US National Library of Medicine and the National Institutes of Health. The site has over 700 health topics, a medical dictionary and encyclopedia, medicine information and interactive tutorials.
Caution: There are also links to videos of surgery which are clearly explained with appropriate diagrams and camerawork - but not for the squeamish.

Health Charters
The People's Charter for Health, available in 33 languages, was formulated and endorsed by 1453 participants from 92 countries at the People's Health Assembly in December 2000 in Bangladesh.

The Mumbai Declaration (2004) focuses on key challenges that the people of the world face today in achieving health: corporate-led globalization, war and occupation, the need for comprehensive and sustainable primary health care, the HIV/AIDS epidemic, environmental damage, discrimination in the right to health, and violence against women.

The People's Charter on HIV and AIDS aims to provide a people's perspective on HIV/ AIDS and related issues like access, rights and trade issues. It was officially released by the People's Health Movement during the International AIDS conference at Bangkok in July 2004.

Other Resources
Accessible Events - A Guide for Organisers
This is a useful resource for anyone planning a consumer participation event. The guide was developed by Meeting Events Australia and the Human Rights and Equal Opportunity Commission. It discusses the legal responsibilities organisers have for making sure that their event is accessible for people with disabilities and gives practical suggestions on how to do this from start to finish.

Advocacy, Leadership, Community Participation: A Training Program for Health Consumers and Carers
This is a useful clear set of practical workshops designed and tested by a broad range of community members. Produced by North Central Metro Primary Care Partnership, it aims at producing more effective participation in the health system. The program outlines workshop topics such as advocating for change, working in groups and finding funds. It includes tips for facilitators and information sheets on issues such as confidentiality and what to consider when deciding whether to join a committee.

A Framework of Consumer Engagement in Australian Health Policy
This article describes a framework for thinking about consumer engagement in Australian health policy. It presents eight interacting issues that influence the practice of consumer engagement: purpose, type, initiator, who is engaged, timing, techniques, practical issues, and contextual issues. Evaluation is recognised as a separate but important factor. These issues can be used to review consumer engagement practice, plan consumer engagement programs, and identify the trade-offs that must be made when conducting consumer engagement.

"Against the Silence": Development and First Results of a Patient Survey to Assess Experiences of Safety-related Events in Hospital
The aim of this study was to develop and pilot test a brief survey for patients in Swiss hospitals. Evidence from the qualitative interviews indicates that safety remains an unsaid word between patients and their care providers.

A Guide to Enhancing Consumer and Carer Participation in Victoria's Integrated Cancer Services
This guide was developed through consultation with 150 people and aims to assist Integrated Cancer Services to plan and engage in meaningful consumer and carer participation as part of their quality improvement. The guide includes participation methods, case studies and references.

A Model Framework for Consumer and Community Participation in Research
This framework provides an overview of how incorporate consumer participation in the various stages of research.

A Model of Payment to Consumers, Carers and Community Representatives
This article presents information about the type and amount of payment made to consumer, carers and community representatives gathered by the National Resource Centre for Consumer Participation in Health. This information was then synthesised and used to establish Inner South Eastern Partnership In Ccommunity and Health's policy on payments to consumer representatives.

A Picture of Global Health
Thinking about health globally is a challenge. Watch this exciting high-tech presentation from Professor Hans Rosling, Professor of International Health at Sweden's Karolinska Institute. You will never think in the same way again about health statistics and world trends!
Note: you will need to have sound on your computer, and the latest (free) version of Flash Player.
See more dazzling data at Gapminder www.gapminder.org

A Typology of Public Engagement Mechanisms
This article defines key concepts in the domain: public communication, public consultation, and public participation. These concepts are differentiated according to the nature and flow of information between exercise sponsors and participants. According to such an information flow perspective, an exercise's effectiveness may be ascertained by the efficiency with which full, relevant information is elicited from all appropriate sources, transferred to (and processed by) all appropriate recipients, and combined(when required) to give an aggregate/consensual response.

Australian Health Care Reform Alliance (AHCRA) is a coalition of 53 organisations who together to represent consumers and health care providers advocating for a fairer and more effective health care system. The AHCRA held a two-day workshop in Adelaide on 16-17 November 2005, for which papers were prepared on seven topics. Health Issues Centre was involved in the development of a paper on the need for dialogue with citizens and consumers about the future of the Australian health system. A brief summary of the paper is also available. For more information about the AHCRA visits their website.

Australian Indigenous HealthInfoNet
This website is a 'one-stop info-shop' for people interested in improving the health of Indigenous Australians. It has a large range of resources to use in policy and practice, and also provides 'yarning places' to encourage information-sharing and collaboration.

Building on Values: The Future of Health Care in Canada
This is the report of the Canadian review of health services conducted in 2002. The report had a very strong level of consultation involvement.

Consumer and Community Participation Self-Assessment Tool for Hospitals
This tool was produced in 2003 after an evaluation conducted with five metropolitan health services led to revision of the previous audit tool created by National Resource Centre for Consumer Participation in Health. The tool is designed to help hospitals and hospital units to assess how much scope their system allows for consumer (patient), carer and community participation. The tool helps to document policies, processes and activities; identify strengths and weaknesses; and determine the steps and resources needed for improvements. The tool can also be used by hospitals to rate current activities using the EQuIP scale.

Consumer Leadership
This report was developed by the Victorian Quality Council through a literature review and consultation with individual, consumer organisation, government departments, academic institutions and health services. The research aimed to identify research, evidence and opinion on consumer leadership and consumer participation in the heath system and hence provide advice on developing consumer leadership and capacity building in health care quality and safety improvement.

Communicating with Consumers and Carers
The Victorian Quality Council has developed this two-part report aimed at improving quality and safety in hospitals by improving communication between health professionals and consumers and carers. Part 1 reviews the existing evidence about the impact of effective communication strategies in improving quality and safety of patient care. Part 2 is guide aimed at assisting hospitals to improve communication.

Community Engagement Handbook
Although developed for Queensland health services, this handbook contains guidelines and practical tools that can be adapted for the Victorian community engagement.

Community Engagement to Improve Health
The NICE guidance includes all the recommendations, details of how they were developed and evidence statements, a quick reference guide for professionals and the public and supporting documents, including an evidence review and an economic analysis.

Consumer and Community Participation Toolkit
This kit contains checklists, planning tools, resources, templates and case examples to assist health services plan and implement community participation activities.

Consumer, Carer and Community Participation Resource
This resource has been developed to assist primary health agencies increase the participation of consumers, carers and the community in their health service. It contains information and resources developed for four workshops that focused on three key themes: the connection between consumer participation, health promotion and community development; engaging newly arrived communities; and consumer participation and chronic disease management.

Cultural Awareness Tool
This tool was developed from Queensland Health's Checklist for Cultural Assessment. It aims to provide health professionals with general guidance in how to interact with people with mental illnesses in a more cultural aware manner.

Cultural Competency in Health
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.

Cultural Diversity Guide
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.

Determining the Effectiveness of Mental Health Services from a Consumer Perspective
This is a two-part paper that explores the factors than affect and promote recovery and the principles that should underpin the evaluation of mental health services. This first part address the factors that enhance. Part 1 looks at enhancing recovery. Part 2 address the barriers to recovery and the principles for evaluation.
recovery.

Developing a Strategy for Consumer and Carer Participation in Cancer Services Reform
This report describes a project aimed at making consumer and carer participation an integral part of the reform of cancer services in Victoria. The report describes the consultation process and literature review project that resulted in the development of A Guide to Enhancing Consumer and Carer Participation in Victoria's Integrated Cancer Services.

Doing It With Us Not For Us
This policy document developed by the Victorian Department of Human Services describes the strategic direction in consumer, carer and community participation across the Victorian health services system. A strategic direction paper is also available.

Education and Support Mental Health Consumer Participation Project
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.

Education for Partnership
Consumer participation is not just about consumers acquiring skills and tools. This project looks at the extent to which doctors are being trained to work in partnership with patients, and what skills are still needed.

Engaging Patients in their Health Care
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.

How to Develop a Community Participation Plan
This resource was developed by the Victorian Department of Human Services to guide community advisory committees through the process of writing a community participation plan. The guide focuses on: building capacity for consumer participation; listening to the community; and working together. A list of useful resources, checklists and a plan template are also included.

IAP2 Public Participation Spectrum
This resource summarises the different levels of community participation, the goals each level can acheive, what each level gives the community, and examples of participation strategies for each level.

Improving Health Services Through Consumer Participation: A Resource Guide for Organisations
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.

Language Services: Good Practice in the Victorian Health and Community Sector
As the number of aged members of Victorian CALD communities increases, and different ethnic populations settle in the state, successful language service delivery needs to be both creative and systematic. This document from the Centre for Culture Ethnicity and Health gives snapshots of good current practice and provides 'how to' guidelines.

Language Services in Victoria's Health System: Perspectives of Culturally and Linguistically Diverse Consumers
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.

List of Resource for Consumer Participation at the Individual Level of Care
This list was compiled by Health Issues Centre and consists of articles, reports and books that focus on supporting consumers to take a more active role in their own care.

List of Resources for Involving Consumers in Research
This list was compiled by Health Issues Centre and consists of reports and articles that focus on how to involved community members in health research.

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.

Multilingual Resident Handbook
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.

Operationalising a Model Framework for Consumer and Community Participation in Health and Medical Research
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.

Pathfinders: New Research on Consumer Participation in Mental Health
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. To order a full copy of the report "Pathfinders - Consumer Participation in Mental Health and Other Services: Evidence Based Strategies for the Ways Ahead" go to: http://www.alphalink.com.au/~alpin

Participation Indicators - Participation in your Health Service System: Victorian Consumers, Carers and the Community Working Together with their Health Service and the Department of Human Services
This discussion paper provides a recommended minimum set of performance indicators fro consumer participation in acute and sub-acute areas.

Participation in your Health Service System: Victorian Consumers, Carers, and the Community Working Together with their Health Service and the Department of Human Services: Consultation Paper
This consultation was held to help develop a consumer participation policy for use across the Victorian health care system.

Patient Partnership in Decision-Making on Biomedical Research
This article concludes that strategies for patient participation can hardly be regarded as effective because they do not ensure patients' structural influence on decision-making. The article identifies obstacles for effective patient participation and searches for clues on how to breach the resilience of the medical model and promote changes toward the inclusion of patients.

The Picker Institute
This institute carries out research in order to make the views of patients and citizens count in health policy and practice. This United Kingdom site not only has many interesting projects but gives access to work in progress and encourages people to comment on papers and read others' suggestions.

Practice Standards to Improve the Quality of Family and Carer Participation in Adult Mental Health Care: An Overview and Evaluation
This paper describes a study to evaluate the impact of the standards about participation on practice in an adult mental health service. Hospital and community files were audited for evidence of participation and for surveys of carers and consumers relating to the quality of participation. The audits were undertaken before and after the introduction of standards.

Public Participation Methods: A Framework for Evaluation
This article outlines a number of theoretical evaluation criteria that are essential for effective public participation. These include two types: acceptance criteria, which concern features of a method that make it acceptable to the wider public, and process criteria, which concern features of the process to ensure that it takes place in an effective manner.

Resource Pack for Consumer and Community Participation in Health and Medical Research
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.

Reward and Recognition
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.

Statement on Consumer and Community Participation in Research
The statement is intended as a guide to consumer participation at all levels and across all types of health and medical research in Australia.

Tests and Treatments: Principles for Better Communications between Health Care Consumers and Health Care Professionals
This toolkit aims to improve communications between consumers and health care professionals so that consumers can take a great decision making role the tests and treatment their receive as part of their own health care.

The Kit: A Guide to the Advocacy We Choose to Do - A Resource Kit for Consumers of Mental Health Services and Family Carers
The Kit is designed to support mental health consumer and carer empowerment. It provides tools and strategies to oppose discrimination and advance the rights of people with mental illness. It also gives background about advocacy and participation, the mental health system and its links to the broader community.

The Victorian Aboriginal Ethics Project Report
This project (2005) asked communities, groups and individuals about how Aboriginal people could have more control over the ethics of research involving them. Six possible models are discussed.

To Pay or Not To Pay that is the Question
The directives from government, at both federal and state level, to incorporate consumer participation into the health system's decision making processes have raised many issues. One of these is whether consumer representatives should be paid remuneration for their work in the health sector and/or provided with reimbursement for the expenses they have occurred. This article will present the arguments for and against payment and explore the assumptions behind these arguments.

What is Patient-centred Professionalism?
If you have heard the phrase 'patient-centred' used a lot lately, this paper is for you! It reviews perspectives and definitions and suggests how these might benefit consumers.

WA Health Consumer, Carer and Community Engagement Framework
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.

Women's Health Victoria's Clearinghouse Connector
This electronic resource profiles information resources on specific topics. These topics change regular and have included social connectedness and sexual and reproductive health education.