Some of the key features of the Illawarra strategies are:

• commitment from top management;

• support through the development of policy and protocols;
• the appointment of a consumer advocate;
• involvement of consumers in planning; and
• development and resourcing of consumer networks.

Summary of research findings

This is an example of consumer participation.
The support of top management was critical.
The importance of resourcing a consumer network to enable consumers to participate
is a key feature of this model.
The appointment of a consumer advocate with community development and group
work skills was essential to the process and was valued by all the groups. Particular
skills are needed to ensure that the outcomes were positive. That person needs to have
the trust of all parties.
It was essential, and took time, to develop trust between clinicians and consumers. This
went better in some projects than others.
Consumer participation needed to focus on what could be done.
Sometimes things go wrong and not every thing that is attempted works.
Staff development had an important role to play.
There was a real enthusiasm for what had been done, but there were still degrees of
reservation among some people on both sides, particularly with clinicians and consumers,
with concerns to manage expectations on one side and scepticism on the other.
Consumer participation is an iterative process.

Illawarra Area Health Service policy statement

Consumer participation (extract)
The Board of the Illawarra Area Health Service recognises that consumer participation is fundamental
in the provision of health services and it will encourage consumers to participate. The participation
of health consumers in health decision-making is an essential component of the management of the
Illawarra Area Health Service.
Definition of terms
Consumers – those who use or are potential users of health services as well as those who may
be directly or indirectly affected by health services including the family and
carers of patients and clients.
Participation – the process of involving health consumers in decision-making about health
service planning, policy development, setting priorities and quality issues in
the delivery of health services.

60
The Protocol of Consumer Participation is made up of the following principles, processes and
implementation strategy.
Principles
A) Participation of community members is an essential component of the management of the
Illawarra Area Health Service and is highly valued.
B) The Illawarra Area Health Service will provide opportunities at the local and regional level for
health consumers to have input into: policy development, identifying priorities, planning of
health services and quality issues in the delivery of health services.
C) Health consumers are encouraged to provide direction to the participation processes. The
Illawarra Area Health Service will support this through consumer access to the Board.
D) Communications links between the Illawarra Area Health Service and health consumers are an
effective two-way process. Information is shared and exchanged with health consumers to
enable them to participate effectively.
E) A range of networks between the Board, health services and the broader community be
established and maintained and accessible to health consumers.
F) The Board recognises the need for resources and support for the consumer participation process
to enable effective participation of consumers and consumer groups.
G) Opportunities are provided for relevant training and education for health consumers to assist
in their effectiveness as consumer representatives.
H) The Board recognises that some communities within the Illawarra have special needs and their
input into the health service will be supported.
I) Consumer participation in consultation processes will occur prior to final decisions being made
with feedback on decisions being provided to the community.
J) Health managers are encouraged to establish and with their staff be involved in health consumer
participation processes aimed at establishing active partnerships.
K) Individual health consumers are acknowledged as advocates from the community as well as
being representatives of groups.
Processes
A) The Illawarra Area Health Service will support a network of health consumer forums based on
geographic areas.
B) Representatives from the various health consumer forums and specific advisory committees
should meet at least twice a year with Board members and senior managers of the health
service. Board members will be invited to local health forum meetings on an ongoing basis.
C) Current consumer advisory committees which advise specific areas of the health service will
continue to be supported (eg Psychiatric Services Community Consultative Committee) as
will the establishment of new advisory committees (eg HIV/AIDS Consumer Advisory
Committee).
D) Health consumers will be members of health service planning committees from the outset.
E) An annual workshop/conference will be held for health consumers.
F) Training programs for consumers will be developed and provided on a regular basis.
G) Health week each year should include a focus on health consumers and their contribution to
the health system.
Individual health units will be encouraged to involve health consumers in their service and will be
recognised for their effort (eg a quality award for consumer involvement).

61