1. Establish a baseline of current activities to facilitate future evaluation of consumer participation in each hospital.

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1 Consumer Participation at Women s and Children s Health Cas O Neill and Jennie Mullins Consumer participation at Women s and Children s Health (the Royal Women s Hospital and the Royal Children s Hospital) has been undertaken at a variety of formal and informal levels for a number of years. Participation strategies have included community consultation for service planning, community advisory committees, consumer liaison/advocate positions, development of charters of consumers rights and responsibilities, patient satisfaction surveys and focus groups. This article gives a snapshot of past and present consumer oriented activities at Women s and Children s Health, together with the findings of a survey conducted to explore staff views about consumer participation. In 2000, in response to a review of the health networks, the Victorian Department of Human Services mandated the establishment of Community Advisory Committees (CACs). The established Community Advisory Committees on Women s Health and Children s Health continued, but developed a more formal advisory relationship with the Board of Women s and Children s Health (WCH). In addition, a coordinating committee was formed across the two sites, the Women s and Children s Health CAC, comprising membership from the two committees. The Royal Women s Hospital (RWH) Committee comprises 15 consumer/community representatives and is chaired by a WCH Board member. Members bring a wide range of women s health concerns - e.g. issues for young women, older women, survivors of violence, Kooris, culturally and linguistically diverse and newly arrived communities, lesbian health and issues for women as carers. The Royal Children s Hospital (RCH) Committee currently has consumer representatives from two peak organisations - the Association for Children with a Disability and the Chronic Illness Alliance - together with staff representatives. In addition, regular forums for young people, those of culturally and linguistically diverse communities and those of Aboriginal background will begin in The Survey Another initiative of the Department of Human Services is the requirement of all health services to develop a Community Participation Plan and to evaluate its effectiveness on an annual basis. In response, Women s and Children s Health has recently undertaken a staff survey of consumer participation activities at both RWH and RCH. The principal aims of this were to: 1. Establish a baseline of current activities to facilitate future evaluation of consumer participation in each hospital. 2. Raise staff awareness of consumer participation and the work of the Community Advisory Committees. 3. Promote information exchange within, and between, each hospital. 4. Assess staff perceptions and needs in relation to consumer participation to inform priorities for the WCH Community Participation Plan. Both hospitals used the same survey questions, based on similar initiatives elsewhere (Department of Public Health, Flinders University and South Australian Community Health Research Unit, 2000). However, each hospital used a different methodology to engage staff (Department Heads and Unit Managers) in the process. RWH disseminated the survey through and hard copies and RCH undertook the survey in face to face discussions. RWH had a 79% response rate (55 responses), while RCH had a 75% response rate (53 responses). Health Issues, 2002, Number 71, pp

2 As staff were the only participants, this is a one-sided view and it is acknowledged that the picture presented here would most likely be different if consumers had taken part in it. Consumers and Consumer Participation - A Complex Picture The issue of who is seen as a consumer is not always as straightforward as it might initially seem - and being patient-oriented is not necessarily the same as being consumer-oriented. Patients and their families were seen as the primary consumers by survey respondents. However, hospital residents, registrars, General Practitioners (GPs) and other community-based professionals are also considered to be consumers of hospital services. In addition, health service staff are themselves often past or present consumers, either as patients or parents. The possibility for consumer participation also varies broadly according to department and unit. Some areas have evolved as a result of community need and are therefore very closely allied to their consumers. Similarly, the Mental Health Act actively requires mental health services to be very responsive to their consumers. At the other end of the continuum, departments involving highly specialised medical knowledge and surgical skills have fewer possibilities for consumer involvement. While there is always room in all areas for enhancing consumer participation, there are different challenges inherent in the process, depending on the area. Personality and professional background also play a large part in consumer participation. Regardless of the area in which they work, some staff are far more open to consumer involvement than others. In addition, professional experience such as previous work in a self-help organisation, or close affiliation with a community based group, is undoubtedly conducive to a consumer-oriented approach. When reporting on a survey of this kind, attempts to measure the effectiveness of various consumer participation activities are nearly impossible. Indeed, at a more basic level, it is often difficult to know how different staff members define, and view, a range of activities. For example, to one person partnership may mean the giving of information to consumers with minimal feedback, while to another it may mean full involvement in designing a new program. All of these issues need to be kept in mind when considering how the survey was undertaken and its findings. Survey Findings Analysis of the findings was undertaken thematically under broad headings of: past, present and planned activities, benefits of consumer participation, drawbacks of participation, barriers to participation and suggestions for the future of participation in WCH. These findings are presented in the separate survey reports for RWH and RCH. The joint WCH Community Participation Plan (still in draft form) presents possible consumer participation directions for the organisation as a whole and is informed by the findings of the two surveys. Consumer Participation Activities There are a number of levels of possible consumer participation activities - e.g. staff giving information to consumers, consultation on treatment, actively seeking consumer advice, joint planning and consumer control. All of these levels are evident in WCH, although to a far greater degree at the more passive end of the consumer participation spectrum. A snapshot of these activities is presented here, however, it is important to reiterate the difficulty of measuring the various meanings attached to consumer participation activities by staff, as well as their effectiveness. Information giving and individual/family consultation appears to be intrinsic to all areas of the health service which took part in the survey. These activities include involving Health Issues, 2002, Number 71, pp

3 consumers in their treatment plans, seeking verbal feedback, informing consumers of their rights and responsibilities and about the complaints process as necessary. Consultation which actively seeks broader consumer views also seems to occur relatively frequently. Although there were differences in the responses from the two hospitals, well over 50% of staff members reported that they had: undertaken written surveys in the past four years; conducted focus groups (formally and informally) to seek feedback; initiated support groups (involving at least some degree of feedback) of different kinds, including information, networking and therapeutic groups; organised forums which included consumers; attended forums (organised elsewhere) which included consumers; ongoing involvement with a range of community-based groups (many of which were non-government organisations) - e.g. self help and illness advocacy groups, schools, maternal and child health nurses, police and country hospitals; sought consumer input on a range of organisational documents - e.g. reports, brochures and policy statements; and sought input into policy and service planning, mostly through focus groups, written surveys or informally with inpatients and their families. Joint service planning seems to be undertaken at a significant level in only a few areas of the health service, while consumer control tends to be rare. However, just over 25% of respondents have invited consumers onto planning committees and 9% of respondents routinely involve consumers in their staff interviews. Benefits of Consumer Participation Staff talked of many benefits associated with consumer participation. The three most often mentioned were that participation: leads to more relevant and responsive services; gives consumers a greater sense of control and empowerment; and demonstrates organisational commitment to partnership. Drawbacks of Consumer Participation The three main drawbacks of consumer participation involved respondents concerns that: some groups are well represented, while others are not at all represented; consumer participation takes scarce time and resources; and participation raises expectations and not all of these can be met. Barriers to Consumer Participation Respondents saw the most significant barriers to consumer participation as being: fear and anxiety; time and resources; and lack of knowledge on how to do it. Health Issues, 2002, Number 71, pp

4 Where To From Here? Consumer participation is a new concept to some staff and can seem frightening (Wadsworth & Epstein, 1998). It involves a (sometimes profound) shift in thinking from an acting for framework to an acting with framework - i.e. towards a dialogue across difference (Wadsworth, 2001). However, in general, WCH staff recognise that consumer participation should be part of what happens at both hospitals, regardless of any perceived benefits or detriments. The need for WCH to continue to move away from its elite status towards creating real and enduring partnerships with consumers and community organisations was also acknowledged. A very small number of staff queried the value of consumer participation and one person said that, if participation occurred at all, it should not be simply in response to blanket rulings from above. However, far more frequently, staff members talked about the need to give something back to consumers, together with the need to publicly acknowledge consumers. Many staff had clearly considered the issues of consumer participation in some depth and made thoughtful comments about the need for participation to have guided foci, as well as the desirability of consumers having experience, understanding and skills appropriate to what is being asked of them. In summary, the survey produced the following broad findings: 1. Staff need a clear understanding of: what consumer participation is (and is not); the role of the Community Advisory Committees; the organisational expectations of them in terms of facilitating consultation and participation; and the resources available to undertake these activities. 2. Many staff talked about the need for a defined structure, and a consumer participation coordinator, to facilitate consumer participation, so that it becomes intrinsic to the work of the organisation rather than an added extra. Staff would like to be able to seek consultation on a range of issues around consumer participation, such as: guidelines on the ways in which consumer participation can be undertaken and the positives and negatives of different strategies; assistance (both professional and administrative) in undertaking surveys, focus groups and other kinds of consultation; interpreting and translation services for consultation with culturally and linguistically diverse groups; guidelines on the rights and responsibilities of both staff and consumers in consumer participation activities; and a Central Resource Exchange on what is being done where and by whom, as well as a list of consumers who would like to become involved in the work of the hospital. 3. Dedicated resources for consumer participation are needed to fund: consumer sitting fees and expenses; staff time and expenses; and Health Issues, 2002, Number 71, pp

5 interpreting and translating services (in addition to those needed for clinical work). Future Challenges Women s and Children s Health faces a number of key issues in facilitating further consumer participation activities. The involvement of culturally and linguistically diverse and rural communities, young people, people with disabilities and infrequent users of the health service will continue to be facilitated. While staff need clear expectations of what is expected of them (i.e. the bottom line ) in consumer participation, opportunities for (and recognition of) excellence should be created and celebrated. It is also necessary to engage staff (especially those who may be negative about participation) in the possibility of moving from an acting for framework to an acting with framework. In addition, training, support and an administrative framework is required to encourage future consumer participation activities (without undermining the wide range of current consumer participation activities). Similarly, resources to support both staff and consumer involvement in participatory activities need to be identified. Undertaking the consumer participation survey at Women s and Children s Health has been positive for several reasons. Firstly, the relatively high response rates at each hospital were a formal indication that consumer participation is seen as important by most staff. Secondly, the process of participating in the survey appears to have increased interest in participation activities. Thirdly, the findings gave the hospitals and the Community Advisory Committees clear future directions, which are reflected in the Consumer Participation Plan. Cas O Neill has a background in child welfare, community health and participatory research and is the Community Advisory Committee Resource Officer at the Royal Children s Hospital. Jennie Mullins has a background in women s health and community health and is the Community Advisory Committee Resource Officer at the Royal Women s Hospital. For further information contact Cas O Neill on oneillc@cryptic.rch.melb.edu.au References Department of Public Health, Flinders University & the South Australian Community Health Research Unit, 2000, Improving Health Services through Consumer Participation: A Resource Guide, Commonwealth Department of Health and Ageing, Canberra. Wadsworth, Y., 2001, Becoming responsive - and some consequences for evaluation as dialogue across distance, New Directions for Evaluation, Vol. 92, pp Wadsworth, Y. & Epstein, M., 1998, Building in dialogue between consumers and staff in acute mental health services, Systemic Practice and Action Research, Vol. 11, No. 4, pp Health Issues, 2002, Number 71, pp