Development of the Guide
Literature Review
An initial literature search was conducted using a number of search terms¹. The purpose of the search was to access similar Guides/Directories. Very few Guides/Directories were accessed and none with the particular criteria we had established.
Criteria for Inclusion in the Guide
The criteria established for organisations to be included in this Guide were: that the organisation participates in activities with health services, has experience of providing consumer, carer or community representatives and would like to provide consumer, carer or community representatives to health services for quality and safety improvement activities.
There are likely to be other small organisations that may fit these criteria but were not contacted due to time limitations. There are also a number of larger organisations who were unable to participate at this time either because they were undergoing restructures or were in the process of developing or redeveloping their consumer and carer participation strategies. It is hoped that some of these organisations will be included in later versions of the Guide.
Contacting the Organisations
The list of organisations to be contacted grew out of other Guides/Directories, information from key informants, peak bodies and suggestions from the VQC Consumer Working Group. In addition we asked the contacts at each of the organisations, starting with peak bodies and larger consumer and community organisations, to nominate other organisations that they thought would meet the criteria and be interested in being included in the Guide.
Directories that were particularly useful in identifying groups were: the Collective of Selfhelp and Social Action Groups Directory; the Child Health Information Centre (CHIC); Support Groups Directory from the Royal Children's Hospital; the Victorian Multicultural Resources Directory; and the Primary Care Partnerships State wide Health Services Directory (all are included in this Guide).
To ensure that the major disease groups were represented² we consulted the Burden of Disease and Injury study conducted by the Australian Institute of Health and Welfare (1999). The Victorian Office of Multicultural Affairs Ethnic Diversity in Victoria Information Sheet and Directory provided the main ethnic communities and language groups to be contacted. All Migrant Resource Centres and Ethnic Communities' Councils were contacted but not all are listed in the Guide as some were unable to respond or did not define their work as directly related to health and quality improvement. Some Migrant Resource Centres and Ethnic Communities' Councils are co-located in the regional areas. Attempts were also made to contact ethno-specific organisations from the 10 major countries of origin and language groups however we have not listed those whose work is more welfare than health oriented.
Several key indigenous workers were contacted and it was found that the Northern Hospital and Northern Division of GPs are working on updating an existing indigenous Directory (and therefore contacting organisations). It was agreed that rather than contacting organisations again, a link be provided through this Guide to the Directory of Victorian Aboriginal and Torres Strait Islander Health and Community Services. This link appears in the resources pages and index.
Collecting the Data
A questionnaire was constructed and piloted with a small number of organisations and then further refined based on feedback from the pilot. Each organisation was contacted by phone, fax and/or email and provided with an introductory letter and questionnaire. Some organisations chose to complete the questionnaire independently and return it whilst others preferred a phone interview followed up by written confirmation. All organisations were sent a draft copy of their entry for the Guide to ensure the correct details were documented. Of the 230 organisations contacted by phone and/or email, 91 submitted completed entries.
In the process of creating this Guide we became aware of the vast number of organisations doing important work with their consumers and carers within their organisational structures and with health services. This Guide serves to acknowledge and build upon this work.
¹ "Self-help groups", "directories", "community directory", "support groups", "support services", "information directory", "community information", "services directory", "community organisations", "community associations", "consumer organisations", "consumer associations", "community networks", "consumer networks", and "consumer services".
² These were cardiovascular disease, cancer, mental health, nervous system and sensory disorders and respiratory disorders.
