Making consumer participation a reality - challenges for cochrane

Article type
Authors
Tito F, Moore K, Borrman P, Cameron B
Abstract
Abstract: It has only been over the last decade that the importance of consumer experience has been recognised in health care. Consumers are now increasingly being sought to participate in health care at the systemic level. However, consumers face many barriers to effective participation. Some of these relate to their own health and economic status and some relate to systemic attitudinal, cultural and other barriers in health care organisations. We have looked at these issues in two ways. Firstly three of us have been consumer representatives ourselves, as well as active participants in consumer organisations, involved in training other consumers, including an ACT Health Department funded Consumer Representative Training Project run through HCCA. Two of us have been involved as volunteer trainers on this project and one as the project manager. Secondly, three of us were part of a project team led by Global Learning Services which conducted research for the Australian Department of Health and Aged Care's Consumer Focus Collaboration into the barriers to participation and what programs might be necessary to educate consumers, providers and health administrators to produce effective consumer participation. The Final Report and Resource Guide from this project are expected to be published soon. In this paper we will describe our first hand experiences as consumer representatives and as trainers of other consumers, including the barriers we have faced in being effective consumer representatives. We will then summarise the results of the research, the questionnaire and the focus groups which were conducted as part of the research project outlined above. Combining this with our knowledge and experiences with the Cochrane Collaboration itself, we will use these to draw out some principles and practical hints which may be useful for the Cochrane Collaboration's efforts in seeking more effective consumer participation in its work. What we have learned is that, to be effective, consumer participation needs to be developed consciously and with an awareness of the circumstances of health consumers' lives. The barriers to participation are very real, and in many ways, as the calls on consumer's time from different parts of the health system increase, additional barriers arise. However, we believe with greater awareness, health providers and organisations seeking better consumer participation can "set themselves up for success", and real benefits can flow to the organisation, the health system and to consumers. Effective empowerment of consumers remains perhaps the major untapped resource in health care, and its achievement has the potential to fundamentally change health care in this century.