Consumer participation – practice examples
This includes examples of organisations and people putting consumer participation into practice.
On the 20th of May 2008 Health Issues Centre held a one day forum for health consumers who participate on committees to share their experiences. The conference was held at Victoria University, 300 Flinders Street Melbourne and was attended by 105 Participants.
Conference presentations, program and report can be viewed by clicking the link below. This file is in zip format
A "healthy" consumer/community partnership - key success factors.
Presented by Elaine Hillis at the Consumers Reforming Health Conference 2011.
Over the last 30 years or so, changes in the application of consumer law and health promotion have led to a more inclusive and better informed society. Though for roughly 20% of the population – those Australians with disabilities – the question is: has this social change really been effective? This article looks at the work of the Disability Advocacy and Information Service, and the regional groups its supports, in bring change to local communities.
A perspective on the patient's role in treatment decisions
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.
Aboriginal and Torres Strait Islander Hospital Accreditation Project Community Report
The Aboriginal and Torres Strait Islander Hospital Accreditation Project aims to obtain accurate data about the use of hospitals by Koori patients and to help develop more accessible and culturally appropriate hospital services. This report looks at the problems and successes of the project and makes suggestions for improvement.
Twenty programs and projects to implement the healthy cities principles and community coalitions were reviewed. Most cases were able to implement successful programs through willingness to collaborate, emphasis on engaging diverse parts of the community, responsiveness to community needs and opportunities for resident input into decision making.
Following a review of curent and past research, and individual and group discussions with Aboriginal consumers and health workers, several potential tools were identified, including development of a culturally appropriate questionnaire, face to face interviews, posters, pamphlets, training sessions and presentations, and creation of an Aboriginal consumer advisory group. The 'Alice Springs Hospital Consumer feedback questionnaire and Guide for Interviewers' is also available from the Publications section of this website.
Austin Bowel Cancer Consortium: Changing Culture in Bowel Cancer Care
The Austin Bowel Cancer Consortium involved doctors and consumers from three Victorian hospitals, along with the North East Valley Division of General Practice, Health Issues Centre, and social science researchers from Swinburne University. The project aimed to better understand the cancer care system so that it could be improved. Patients and carers took part in interviews about their experiences of services, and participated in consumer reference and implementation groups. Consumers also contributed to a psychosocial working group which focused on communication between clinicians and patients.
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
Bayside Health Community Advisory Committee: Making it Work
The establishment of Community Advisory Committees (CACs) within the Metropolitan Health Services in Victoria has increased the scope of hospitals’ consultative processes with consumers, carers and the wider community. CACs aim to achieve a shift in culture to embed the opinions and views of consumers, carers and the community into health services' decision making and planning processes. This article records the account of one CAC’s attempts to establish its role within the health service.
Bendigo Health 2010 CAC Forum Presentation
CAC's journey into a more strategic dircetion at Bendigo Health
Bendigo Regional BreastScreen Consumer Advisory Group: Working Together to Represent Women
BreastScreen Victoria is part of the national mammography screening program, BreastScreen Australia. The program provides free mammography to eligible asymptomatic women, over 50 years of age. Bendigo Regional BreastScreen is one of eight screening assessment services in Victoria and covers a large geographical area. There is one fixed screening site in Bendigo and regular screening with the Mobile Screening Service at Echuca, Kerang and Swan Hill. This article reports on the consumer participation activities at Bendigo Regional BreastScreen from the inception of the screening program and includes the work of its Consumer Advisory Group.
Bringing the Community Voice to Peter MacCallum Cancer Centre
In 1999, the Victorian government conducted a Ministerial Review of Health Care Networks that resulted in the establishment of 12 Metropolitan Health Services (MHS). It was recommended that the community have meaningful input into the MHSs’ planning, service delivery and policy development through a number of mechanisms including the creation of Community Advisory Communities (CAC). This article describes the experiences, challenges and achievements of the Peter MacCallum Cancer Centre CAC in Melbourne.
Building on Values: The Future of Health Care in Canada
In 2001 the Privy Council of Canada, at the direction of the Prime Minister, authorised a Royal Commission into Canada’s Medicare system as there had been widespread concern about the direction health care in Canada was taking. This article examines the reasons for the Royal Commission, its findings, and their relevance to the Australian heath care system.
Cancer Australia - Cancer Support Groups
A guide to setting up peer-faciltated supports for peer facilitators.
Citizens Juries: A Model for Involving the Community in Health
Increasingly, consumer participation in treatment decisions has become a focus of health care management. Interest is now shifting to models of participation by consumers not just as patients but as citizens with a right to participate in resource allocation and other health policy concerns. This article examines a Western Australian attempt to adapt the concept of citizens’ juries as a model to broaden the range of consumers engaged in policy development in Australia.
Cochrane Consumer Network
This Network is an example of how consumers can participate in assessing the evidence of what really works in health interventions. Consumers throughout the world communicate via a moderated email list. The site gives examples of how consumers are contributing in a range of ways to the reviews undertaken by Cochrane Collaboration teams.
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.
Community Advisory Committees and their Communities of Interest
The Victorian Department of Human Services requires public health services to set up Community Advisory Committees (CACs) which among other responsibilities, are required to obtain community views, comment on community issues and enhance community participation. But just what is ‘The Community’ and how can CAC’s engage with ‘it’ to undertake these obligations? This paper looks at how a CAC can identify local ‘communities of interest’ through its own membership so bringing a wide range of community views to its responsibilities.
Community Engagement as Easy as ABCD
This paper describes the experiences of the South Metropolitan Public Health Unit and the City of Fremantle working with Indigenous communities to plan future actions. They used an assets-based community development (ABCD) approach called Appreciative Inquiry, to engage an Indigenous community and local services to evaluate a cultural community development program.
Paper presented at the 15th National Health Promotion Conference convened by the Australian Health Promotion Association held at the National Convention Centre, Canberra 13-16 March 2005
Leeann Murphy, Penny Kordyl, Marie Thorne
Community Participation in Action
In September 2003, Southern Health held a forum where four methods of consumer participation (written survey, discussion group, nominal technique and citizens' jury) were used to explore community opinions on funding, providing resources, and setting priorities for public health. The forum aimed to compare decisions and ideas produced by each method to determine was best able to produce "meaningful community input".
Community Participation in the Design of Health Related Information
The California Wellness Guide is a health information and referral resource designed to provide information on how to stay well and where to find help on health related topics for a socially and culturally diverse population of 10 million people in the USA. This article describes how community participation played a central role in the development of the content and format of the Guide. Both the process of developing the resource and the final product suggest strategies useful to the development of health information resources in Australia.
Community Participation: A Bottom Up Approach
This article describes how the Mallee Division of General Practice developed a consumer participation strategy, which started with just nine focus groups and led to a network of ongoing groups working, and succeeding at improving health and health services over several years.
A resource kit designed to assist Area Health Service Managers and project leaders in establishing and maintaining community and consumer input into planning, policy development and service monitoring.
Presented by Bich Hoa Ha at the Consumers Reforming Health Conference 2011.
Community participation in rural primary health care: intervention or approach
Published in the Australian Journal of Primary Health.
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.
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.
The aim of this guide is to support consumers and carers participating in national advisory and reference groups of Cancer Australia.
Consumer Participation at Women’s and Children’s Health
Consumer participation at Women’s and Children’s Health (the Royal Women’s Hospital and the Royal Children’s Hospital) has been undertaken at a variety of formal and informal levels for a number of years. Participation strategies have included community consultation for service planning, community advisory committees, consumer liaison/advocate positions, development of charters of consumers’ rights and responsibilities, patient satisfaction surveys and focus groups. This article gives a snapshot of past and present consumer oriented activities at Women’s and Children’s Health, together with the findings of a survey conducted to explore staff views about consumer participation.
Consumer Participation in Cancer Research June 2010
Resources developed for the 2009-2010 project with the Victorian Cancer Agency.
Consumer Participation in Health: Translating Policy into Practice
Many health services find themselves wishing or needing to develop consumer participation programs and integrate them into their organisation’s structure. This article contains two models, the first describes how any health service could begin to develop a consumer participation program that is driven by the consumers that access its service. The other example provides greater detail of the model used by Alfred Psychiatry and two of the projects that have developed from it.
Consumer Participation in Staff Selection Strategy
At the Northern Area Mental Health Services a Consumer Participation in Staff Selection Strategy was initiated by consumers and involved the recruitment, training and participation of consumers in staff selection processes. The evaluation two years later found that it had 'profoundly influenced the culture of the service' (p. 6), not just in employment processes, but in terms of relationships between staff and consumers.
Consumer Participation in the Sharing Health Care Initiative Demonstration Projects
The Sharing Health Care Initiative (SHCI) is part of the Commonwealth Department of Health and Ageing Enhanced Primary Care Package of 1999-2000. Twelve demonstration projects, including five Indigenous projects were conducted. Each project focused on enhancing self-management of complex health conditions by testing and evaluating chronic condition self-management service delivery models. This article describes the lessons learnt from consumer participation in the ACT and Queensland SHCI demonstration projects.
Consumer Training Program Dates 2011
Nationall recognised qualifications in health consumer leadership and engagement.
The Austin Bowel Cancer Consortium was one of the four sites chosen to test the Clinical Support Systems Program model and explore how to support clinicians and specialists to optimise the use of evidence in their practice and how consumers can be involved in the process. This article describes how consumers participated in the project, how they perceived the experience of participation, and to what extent they considered their participation empowering and effective in delivering more responsive health services
Consumer and Community Participation in Metropolitan Health Services
This is a report of workshop held by Health Issues Centre on the 30 April 2001 that involved the Executives and Boards of the 12 Metropolitan Health Services. Issues examined include: the community's capacity to engage; skills and competencies of organisational staff; dominant professional service culture within organisation; overall organisational ethos and culture; and dynamics of the local and national politicial systems.
Consumer and provider partnerships: what makes them work
Twenty-two diverse projects were conducted in all states and territories in a variety of acute and community health settings, both public and private. This report of the project highlights key elements of successful partnerships including good processes which lead to successful outcomes. The case studies (Chapter 4) provide examples in real-life contexts and the project as a whole demonstrated some important learnings for how future funding of similar programs should be structured.
Consumer experiences of participation in Community Advisory Committees
Presented at the Consumers Reforming Health Conference 2011.
Consumer participation in Australian Divisions of General Practice: a case study
A General Practice Division is a local network of General Practitioners. There are 123 of them across Australia. Many of these Divisions of General Practice have involved consumers and the community in the planning and implementation of their work. The case studies document the rationale for involving consumers; describe the desired outcomes of consumer involvement; the methods employed to involve consumers and the enablers and barriers to consumer participation efforts from both the Division and consumer's perspectives.
Consumer participation in accreditation : project report
The four pilot studies undertaken during this project provided an opportunity to demonstrate how consumers could be engaged effectively in accreditation processes either at the health facility level or as reviewers and surveyors in an accreditation team. Elements of the project included a literature search, an international survey of accreditation agencies, and interviews with consumer and provider participants in earlier accreditation studies. The report makes recommendations for achieving widespread and long-term involvement of consumers in accreditation and quality assurance processes.
Consumer participation in healthy partnerships
Presented by Sophy Athan at the Consumers Refroming Health Conference 2011.
Consumer participation in sharing health care initiative project: a case study report
Each Sharing Health Care demonstration project focuses on enhancing self-management of complex health conditions by testing and evaluating chronic disease self-management service delivery models. These case studies projects cover rural, urban and remote settings, and involve a wide range of communities including Aboriginal and Torres Strait Islander communities in Queenland and the Australian Capital Territory.
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.
Consumer voices in clinical review
Presented by Darlene Cox at the Consumers Reforming Health Conference 2011.
Consumers Have their Say in the Management of Hypertension
This article describes the Take the Pressure Down Project that aimed to improve health outcomes and quality of life for consumers with, or at risk of, hypertension in the Banyule and Nillumbik Shires. As part of the commitment to engaging consumers in the planning, development and delivery of this project, a Consumer Reference Group was established. The article covers the establishment of the Consumer Reference Group, the support provided and key lessons learnt from this model of consumer participation.
Consumers Improving Equity of Access to Services
Presented by Fidye Westgarth at the Consumers Refroming Health Conference 2011.
Consumers and Carers' Experiences of the Acute Phase of Stroke Care
This project involved Health Issues Centre conducting a review of the literature surrounding consumer issues in stroke care as well as focus groups and individual interviews to provide insight into the consumer experience of stroke care at Monash Medical Centre and West Gippsland Hospital. This report contains the findings of this project.
Consumer’s Voices in Victorian Primary Care Partnerships
In 2002, the Victorian Department of Human Services commissioned Health Issues Centre to conduct the Enhancing Consumer, Carer and Community Participation in Primary Care Partnerships project. The project’s aim was to enhance the Primary Care Partnership’s (PCP) capacity to undertake effective consumer, carer and community engagement strategies. During the course of the project Health Issues Centre received a request that the voices of the consumers participating in PCPs also be heard in the project. This paper outlines the methodology and findings of a small study conducted to capture the views of consumers participating in PCPs.
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?
Creatiing Decision Support Tools That Work
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.
Creating a Conversation: Insights from the development of a decision aid.
This article describes the process to develop a Decision Aid in collaboration with patients affected by diabetes type 2.
Creating a dialogue in community health at North Yarra Community Health
The project involved creating and working with a team of consumer consultants who represent the various communities which make use of the service. The community consultant role includes networking, gathering views, identifying health iswsues, working in collaboration with the service and other organisations, and reporting back to the community. The report outlines processes used to recruit and train community representatives, examines the complexities of consumer representation and discusses outcomes and lessons learned from the project.
Criteria for judging the quality of patient decision aids
This resource looks the standards, content and process of developing a patient decision aid
The Victorian Clinical governance policy framework is the Department of Health’s policy on clinical governance. This checklist is a tool to assist the department to review its roles and responsibilities in facilitating effective implementation of the policy.
The Victorian Clinical governance policy framework is the Department of Health’s policy on clinical governance. This checklist is a tool to assist the department to review its roles and responsibilities in facilitating effective implementation of the policy.
Developing consumer driven performance reports for acute cardiac services
The project challenged the assumption that performance reports should provide data. Consumers raised concerns about the benefits of data and challenged the typical boundaries that relate to accountability and not to the consumer experience. The project involved two consumer partner organisations - Heartbeat Epworth Inc, and Cardiomyopathy Association of Australia Ltd. The project aimed to develop a report using the Purposeful Reporting to Consumers' framework.
Doing It With Us Not For Us: Strategic direction 2010–13
The policy’s Strategic direction for 2010-13 targets the Victorian
public health service system including acute, subacute, mental health,
community health, and residential aged care facilities.The new Strategic direction 2010-13 is centred upon a comprehensive suite of participation standards, indicators and targets for health
services.
Eastern Health 2010 CAC Forum Presentation
Developing a new framework at Eastern Health for consumer, carer and community engagement.
Education and training for consumer participation in health care: resource guide
The guide does not provide a formula on how to undertake education and training for consumer participation. Instead it is a guide to what other people have done with some commentary on the processes used and principles that might have underpinned those processes.
Education and training partnerships in mental health: learning together
Report of a project commissioned to advise on future directions for education and training. The method of the project was consultative, involving fifty or so people committed to improving mental health services through education and training. The central focus became the need for change within and between five major disciplines. The key driver was the needs and rights of consumers and carers, as they defined them around their 'lived experience'.
Embracing a strong consumer participation model in research at Arthritis Victoria.
Presneted by Esther Lim at the Consumers Reforming Health Conference 2011.
Encouraging consumer demand for qualified interpreters for health appointments.
Presented by Spase Veljanovski at the Cosnumers Reforming Health Conference 2011.
Engaging Cancer Patients and their Carers: The Grampians experience
Presented by Anthony Love at the Consumers Refroming Health Conference 2011.
This project aimed to enhance consumer participation in the four metropolitan health authorities located in Perth. Specifically the project aimed to achieve a clearer direction for community advisory councils established by health services and hospitals. Activities of the project included interviews, focus groups and forums conducted with service providers, staff and represented and non represented consumers. The project highlighted a lack of commonality in approaches to consumer participation. Outcomes of the project included the development of a Community Advisory Council Participation Plan. The plan is included as an appendix to this report.
Enhancing consumer participation within psychiatric nursing academia
The aim of this consumer/provider partnership was to promote consumer participation in the education of mental health professionals through the creation of a 'consumer academic' staff position at the Centre for Psychiatric Nursing Research and Practice, University of Melbourne. This report outlines the processes through which this position was implemented, details activities undertaken by the consumer academic, and examines key learnings of the project
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
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.
Executive Conversation Rounds incorporating a Consumer Constant Model
Presented by John Clark Kennedy at the Consumers Reforming Health Conference 2011.
A question and answer approach is taken in presenting the information from the Illawarra Consumer and Provider Partnerships Project. Key to the Illawarra approach was the appointment of a Consumer Advocate whose role was to focus exclusively on the cultural change needed to develop effective working relationships between the service and the community. Relationship building occurred at many levels and the Illawarra Area Health Service now supports a number of consumer participation mechanisms, and consumers are represented on a number of consumer support groups. The model is not a static one but is continually developing.
Family caregivers, patients and physicians: ethical guidance to optimize
A new position paper from the American College of Physicians (ACP) provides ethical guidance to physicians for developing mutually supportive patient-physician-caregiver relationships.
Getting it right: involving consumers in policy development for diabetes
The project aimed to develop a network of consumers with diabetes who had an interest in shaping the services they use, and who could lobby for changes in service provision and support for people living with diabetes.
Guidelines for Consumer Representatives 4th Edition
Published by the Consumer Health Forum.
The partnership for this study was between the Epworth Hospital and the Endometriosis Association (Vic) Inc. The aim of the study was to discern the information needs of women facing laparoscopy for endometriosis, and to develop an information strategy and pathway that would meet these needs.
Health Advocacy Framework Queensland Health 2011
The Health Advocacy Framework: Strengthening health advocacy in Queensland aims to inform stakeholders about health advocacy and provide a framework to assess and strengthen health advocacy.
Healthy Hawkesbury: Improving accountability and responsiveness to consumers
Reports a project which aimed to enable consumers to participate in defining, evaluating and reporting on the quality of health service provision by the Hawkesbury District Health Service, NSW.
How are Community Advisory Committees meeting the ‘Doing it with us not for us’ Policy
19 Community Advisory Committees (CACs) across Victoria are asked to identify one objective/action in Community Participation Plans (CPP) and discuss how it relates to the priority actions and standards in ‘Doing it with us not for us’Policy.
Illawarrra consumer confidence mechanisms and model of consumer participation
Final report of the Illawarra Consumer and Provider Partnerships Project, a partnership between Illawarra Area Health Service and the Illawarra Consumer Health Council. The project aimed to develop consumer confidence mechanisms within the health service. See related report on this website 'FAQ: Frequently asked questions about consumer participation in health'.
Presented by Sally Crossing at the Consumers Reforming Health Conference 2011.
Improving health services through consumer participation: a resource guide
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. This is in a zip file and includes Sections 1 to 7 plus Appendices. To open a zip file you need to save the zip in your desktop and then right click to open. Each of the sections are also available separately in pdf format (see separate entries in this website).
Information series. An introduction to participation in health
Consumer participation is increasingly being linked with improvements in the quality of health care and improved health outcomes, and as a result is being encouraged by Commonwealth, State and Territory governments. This information sheet provides a brief overview including definitions, examples of consumer participation in action; benefits of consumer participation in health and what's on the horizon for consumer participation.
Information series. Key resources and tools for participation in health
Resources are listed in this information sheet according to themes including: introductory resources; resources that support consumers; resources that support health service providers; resources for self-assessment; resources in education and training; resources with a focus on hospitals and resources that help identify nmethods and models of participation; accreditation; consultation; resources focusing on specific groups of consumers; policy examples; practice examples and participation in research.
Information series. Methods and models of consumer participation
This information sheet provides a brief introduction to the various methods of consumer participation. This information sheet provides an overview of the various degrees of participation from participation at the level of individual health care through to participation at an organisational level.
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.
http://www.insideradiology.com.au
Involving consumers in improving hospital care: lessons from Australian hospitals
The aim of this project was to write a report directed at hospitals which provides examples from Australian hospitals of how consumer partnership can be used to improve quality of care. This report provides the first analytical account of what might make consumer partnership work in hospitals. It contains a range of case studies and a few good examples of consumer participation.
Resources and information support increased consumer and community participation in health research.
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.
Mental Health Discrimination and Insurance. A Survey of Consumer Experiences 2011
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.
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.
New Resources added for July 2009- Public Engagement
A collection of resources focusing on public engagement in health policy
New Resources added for March 2010- Patients as partners in care
New resources added to our website for March 2010
New Resources added for November 2009- Ageing and Participation
New resources, web links and practice examples added for November 2009
Aged care and participation
Health Issues Centre with funding from the Department of Health maintains and provides a webpage which contains information about consumer participation in health. Documents focus on resources - key relevant policy documents, examples of participation in practice, and research on consumer participation.
Nicola Bruce 2010 CAC Forum Presentation
Consumer voices contributing towards health workforce policy and planning.
Noni Bourke's presentation "Moving to a partnership culture" from the "More than a standard: practical partnering with consumers" forum, 5 March 2013.
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
PHRN Management Council Consumer Representative
Position Description
Patient Care Experiences Enhanced by Use of Online Journals
Patient Gateway (PG) at Partners HealthCare in Boston, MA is a portal through which patients can communicate with their primary care providers (PCP) and review selected sections of their medical record. The article describes the results of a survey undertaken with patients after their visit to the doctor and having use the online portal.
Patient Consultation and engagement with practice nurses.
Presented by Elsa Lally at the Consumers Reforming Health conference 2011.
WA Council for Safety and Quality in Health Care, Office of Safety and Quality in Health Care, Department of Health and the Health Consumers’ Council of Western Australia, 2006.
This booklet has been designed to provide information to help patients determine the best plan to achieve the most satisfactory outcome during their time in the WA health system.
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 Public Involvement Homepage. (UK)
This specialist collection aims to support the implementation of patient, user, carer and public involvement in health care by providing access, in one location, to the best information which is freely available on the Web.
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.
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
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.
Queensland Health: consumer and community participation toolkit
This kit is intended for use by staff who want to increase consumer and community participation in their area of Queensland Health. This is an user-friendly, easily accessible resource which contains information, case examples, methods, tools and resources which are relevant and meaningful to their organisational context.
Real Lives Real Jobs - Developing a sustainable consumer workforce in the mental health sector.
Presented by Wanda Bennetts at the Consumers Refroming 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.
Refreshing the CAC Vision - A Decade On
Forum Report from July 2010.
Register 4 - National Breast Cancer Foundation
Register4 is Australia’s first online community for volunteer breast cancer research participants. By joining us you could help researchers spend less time finding volunteers and more time to find a cure.
Royal College of Physicians (UK).Patient Involvement Unit.
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.
Southern Health 2010 CAC Forum Presentation
Consumer Participation training for managers at Southern Health.
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.
Strengthening the link: 'hand in hand' and 'Hotlink'
The aim of this project was to foster and strengthen a more effective working partnership between the Royal Hobart Hospital and the Tasmanian community. Two sub-projects were undertaken: (1) 'Hand in Hand' which aimed to build consumer networks and (2) 'Hotlink' which developed a website to provide pertinent information to consumers.
TasCOSS - HACC Client Engagement Toolkit
Tasmania Council of Social Services. 2011. HACC Model for Client Engagement – Tool Kit. Hobart.
This Tool Kit was developed to support the implementation, monitoring and documentation of consumer engagement in the aged care sector .
Telling it like it is: Project report
This is the final report of a project designed to improve the breadth and depth of consumer input into service management. A consumer of the mental health services initiated this project.
The Advocacy Toolkit for Consumers Queensland Health 2011
The Advocacy Toolkit gives consumers an easy to use resource that supports better discussions with their healthcare professionals and help them to take an active role in decision-making about their own health care.
The El Paso Collaborative Health Literacy Curriculum. 2001
The five step model
The Five Step model is built on using learner-generated topics, information-gathering involving reading and discussion, and a learning process that engages reading, writing, speaking, listening, and critical thinking resulting in practical out-of-the-classroom English language use (action activities). Philosophically, the approach builds on whole language theory while addressing learner needs for practical instruction that works.
The Mental Health Culturally & Linguistically Diverse Consumer Refernce Group of Victoria
Presented by Evan Bichara at the Consumers Reforming Health Conference 2011.
Presented by Alice Irving at the Consumers Reforming Health Conference 2011.
Presented by Nikos Thomacos at the Consumer Reforming Health Conference, July 2011.
Victorian good practice example- Northern Health
One of the ways that Northern Health celebrates Community and Consumer Participation is through an annual Community Participation Week. Since 2005, five Community and Consumer Participation Weeks have been conducted which have provided a platform for staff education about consumer and community participation. This has demonstrated Northern Health’s commitment to the relevance and importance of involving consumers across the different levels of participation.
Voices heard: Queer community advise health service.
Presneted at the Consumers Reforming Health Conference 2011.
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.
blueVoices - beyondbule's model of national consumer and carer participation
Presented by Bonnie Vincent at the Consumer's Reforming Health Conference 2011.
