Projects-Completed
Cancer Australia: Consumer Orientation and Information Resource Project
Tony McBride, Tere Dawson, Vanessa Lynne and Nicola Bruce
This project forms part of the Strengthening Cancer Care Initiative and is funded by the Australian Government. The project aims to provide suitable and sustainable training and support mechanisms to both consumer members of national committees and cancer support networks around Australia.
The project delivered:
Resource development did not start from scratch. Existing relevant resources were reviewed and used in the development of the documents, especially resources and packages where consumers have been heavily involved in their development. The project finished in March 2008.
Development of Potential Consumer Participation Models for Care Connect
Tony McBride and Maria Wright
The aim of this project was to identify how Care Connect can embrace consumer representation to enhance the quality of its client services.
The specified objectives of this project were to:
Care Connect is a non-profit organisation specialising in assessment, care management and brokerage service. This project will be undertaken between April and June 2006.
Development of a Strategy for Consumer Participation-Mornington Peninsula Division of General Practice
Lauren Cordwell, Tony McBride and Tere Dawson
This project developed a consumer participation model for the Mornington Peninsula Division of General Practice. Through interviews with local stakeholders and a review of key lessons from the experience of other Victorian Divisions, this project identified the key rationales for engaging consumers in Division activities and proposed some models for consumer participation that took into account the views of stakeholders and the Division and were based on current consumer participation good practice.
Effective Engagement of Consumers and Community in the Development and Dissemination of Health Advice
Tony McBride, Panayiota Romios, Margaret Wohlers and Sandra Robinson, in conjunction with the Royal Australasian College of Physicians
The project was funded by the National Health and Medical Research Council (NHMRC) and focused on identifying and documenting current practice in consumer participation in health advice development (e.g. health information, clinical guidelines, health policy). The study explored how the good practice we discovered in other organisations could be applied to the Health Advisory Committee (HAC) of the NHMRC.
The project also examined ways to engage people whose participation has traditionally been disadvantaged, such as Aboriginal and Torres Strait Islander people and people disadvantaged by illness, culture, socioeconomic situation, disability or location. The project involved a literature review and consultation. An analysis and synthesis of the findings was developed from both these sources.
Consultations involved interviews with HAC working committee members, developers and disseminators of health advice, consumer organisations, and other key individuals and organisations with knowledge and expertise on the engagement of consumers and the community in the development of health advice.
The project found that the most participatory approaches to consumer involvement were taken by consumer organisations or organisations using a community development or partnership method. These approaches typically depend on good collaborative relationships between the consumer and professional groups involved. Although there was common agreement on what were the key elements of good practice in consumer participation in developing health advice, participants could not point to many models of good practice actually being used in the field currently.
Informed Parental Consent for Newborn Screening in Victoria
Tony McBride, Kim Hider and Charin Naksook
In May 2005, the Department of Human Services funded Health Issues Centre to develop a report on informed consent by parents for newborn screening in Victoria. The project aimed to explore the factors that facilitate parental consent to newborn screening-and related issues such as secondary uses of the card-and to determine those factors that obstruct/hinder/impede such consent.
We consulted with 150 key stakeholders including interviews with 15 key informants with expertise in privacy, informed consent, consumer advocacy, maternity services, and genetic services. Focus groups and individual interviews were conducted with 67 health professionals including midwives, maternal and child health co-ordinators, shared care general practitioners, obstetricians, and paediatricians. Nine focus group interviews were held with a total of 60 mothers and eight fathers. These included two groups of mothers from culturally and linguistically diverse backgrounds (Vietnamese, Horn of Africa) using interpreters. Selected relevant literature was also appraised.
Key findings included limited parent and health professional knowledge of current storage, access and secondary uses of the newborn screening cards. There was strong parental support for the screening program, but significant concerns about not being informed about, and giving consent to, indefinite storage and the secondary uses. Recommended models for parent information and parental consent for newborn screening were developed and validated by key health professionals and consumers previously consulted.
The project has finished and the final report was submitted to the Victorian Department of Human Services' Newborn Screening Review Committee in December 2005. The most effective strategies for giving parent information to obtain informed consent and the most efficient methods of recording the consent were identified. Informed by this final report, the Newborn Screening Review Committee has produced their report and recommendations, signed off by the Department's Ministry in 2006. The final report on this project is now available.
Monash Division of General Practice - Developing Divisional Capacity for Undertaking a Community Health Needs Assessment
Lauren Cordwell
Health Issues Centre provided tailored support to the Community Advisory Panel at the Monash Division of General Practice. This Community Advisory Panel is implementing a project which aims to enhance the capacity of the Division to undertake a community health needs assessment and identify the unmet health needs of the catchment. Health Issues Centre supported the design and implementation of this project and specifically delivered a workshop to the Community Advisory Panel on implementing a community health needs assessment and utilising population health data.
Older People Living Alone without a Carer Project
Panayiota Romios, Ian Gardner and Laura Varanelli
The Health Issues Centre, in conjunction with the Council on the Ageing Victoria and the Lincoln Centre Ageing and Community Care Research, undertook the project on behalf of the Victorian Department of Human Services to improve understanding of what paid and unpaid care people living without a carer do access and of why and at what points in the health and care continuum older people living with and without a carer do not access care that would meet their needs. The project also from published and unpublished information, care needs and existing paid and unpaid care service models to support older people living alone at home without a carer.
Southern Melbourne Integrated Cancer Service (SMICS): Optimising Consumer Participation in Cancer Services
Tere Dawson, Lauren Cordwell and Tony McBride
In May 2005, Health Issues Centre was commissioned by SMICS to develop and implement a model for active consumer participation as a key strategy for improving cancer service delivery in southern Melbourne. This two-year collaborative project will involve the recruitment and education/training of consumers and carers who will be members of committees working with clinicians in the implementation of the Patient Management Frameworks (PMF) and other high level decision making committees within SMICs. Tailored training in consumer participation for clinicians involved in SMICS will also be developed and implemented. The project also aims to develop, trial, and evaluate diverse methods and tools for consumer and carer participation in cancer services delivery and quality improvement.
In 2006, the project completed several of the planned stages. These included the development of roles and terms of reference for consumers and carers participating in SMICS Tumour Groups and the SMICS Advisory Groups; development of a model for recruitment of consumers and carers to participate in SMICS committees; and development of a model for consumer participation in quality improvement.
In 2007, the project implemented a series of pilot projects with Tumour Groups to consult with consumers about aspects of their cancer care; developed two Information Sheet for clinicians about consumer participation; and started a process evaluation of the overall project.
