Editorial - Vol 3, No 5:  Consumer Representation in Health Services Delivery

This month’s edition of Healthcare Review – Online^TM considers the role of consumers in developments in the health care system in New Zealand.

Support for consumer participation is increasing worldwide, the growth of the health consumer movement and the growth of government and professional interest in consumer participation serving to reinforce one another.

Consumer representation is no longer simply the domain of the independent individual or consumer group. Increasing academic, professional and government interest in consumer representation has an important role in advancing the development of consumer and community participation in health.

Susan Noseworthy, National Policy Analyst, Schizophrenia Fellowship New Zealand, considers consumer representation in mental health services.

In general, consumer representation in mental health aims to improve service responsiveness to service users and to their families/carers.

Mental health services in New Zealand are required by the government to consult with consumers and families/carers of consumers about service development. Requirements to involve consumers and families/carers in service design and delivery are set out in key documents and to some degree these directives are translating into action by service purchasers and providers.

The Health Funding Authority includes consumer advisors in decision-making in mental health divisions and will soon begin working with family advisors. Consumer and family participation in mental health services providers extends to decisions in recruitment and physical service design but tends to be less common in decision-making related to actual service design and delivery, especially in hospital and health services settings. As a result, consumer involvement can begin after key decisions have been taken.

There is a need to move beyond the “institutional’ thinking of some mental health managers and staff such that consumer and family involvement is more than token and the positive results of user involvement that are beginning to be recognised are realised.

Warren Lindberg, Health Promotion Consultant, formerly Executive Director, New Zealand AIDS Foundation, specifically considers health consumer involvement in preparation of health care guidelines, an area of involvement without the government directives operating in mental health.

Consumer involvement in decision-making about best-practice is supported by the fact that clinical outcomes improve when health consumers are actively involved in managing their own health – shifting emphasis from curing illness to promoting health. Increasing consumer involvement is also important to create bottom-up pressure for evidence-based interventions.

Lindberg reviews barriers to consumer participation including the inter-related lack of education, poor access to information and low confidence. The different value-bases of health professionals and consumers also pose problems to effective representation.

He highlights the demands on the consumer representative resource, and the need to juggle urgent and competing demands.

A key issue relates to the need for clear definition of the consumer and who or what they represent. Issues related to selection of consumer representatives and the impact of stereotypes, both medical practitioners’ stereotypes of consumers and consumers’ stereotypes of medical practitioners, are also raised.

Lindberg goes on to address effective ways to involve consumers that maximise their ability to contribute. The key role of communication in overcoming barriers to participation is widely recognised. The need for authentic partnerships between health organisations and consumer advocates based on equity, transparency and mutual benefit is also raised.

Hilda Bastian, Chairperson, Consumer’s Health Forum of Australia presents the current status with health consumer representation in Australia. She presents a picture of increasingly extensive consumer representation in health care services, policy, and research relative to other countries and attributes this to various historical and cultural reasons. The support of successive national governments for a consumer-initiated body representative of health care consumers, the Consumers’ Health Forum of Australia, has been a key factor in the evolution of health consumer advocacy.

Bastian reviews the problems faced by consumer representatives, which she sees as common to all countries. Budget constraints often mean that consumer participation in professional organisations is “last on, first off” and this represents a significant challenge. Inadequate training and support for consumer representatives and the lack of a clear mechanism for regular evaluation of the experience of consumer representation are other important issues.

Issues related to sole representation of consumers on committees are becoming recognised and a trend towards more sophisticated approaches to decision-making and consultation will be valuable for consumer representation.

Increasing recognition of the role of consumer representation is welcomed but, in keeping with Lindberg, Bastian highlights the resultant increasing demands on consumer representatives and the need for ever-broadening skills. This requirement combined with a lack of funding and an ongoing expectation of volunteerism can create considerable stress.

A further paper from Christine Dunn, Consumer Representative, Mind and Body Consultancy, who has current affiliations to Auckland Healthcare and to the Health Funding Authority, Northern Division, will be added to the edition at a later date. This paper will present a view of the role of consumer representation in the mental health and general health areas.