Consucrats Have Agency: What Next for the Profecrat? Comment on "The Rise of the Consucrat"

The trend in ensuring adequate consumer representation across diverse activities and sectors, not least in healthcare, has been speedily implemented, sometimes at the expense of strategy. This commentary explores the concept of the consucrat as a consumer representative, presented by de Leeuw, which raised important questions regarding the way in which individuals and health services interact and collaborate. Adopting a complex services marketing lens, the position of the consucrat is discussed in relation to agency underpinning three tensions identified by de Leeuw: designation; professionalization, and; representation. For equality, professional service providers are referred to as ‘profecrats.’ Supporting de Leeuw, challenges are made to the underlying assumptions implicit in terms used around representation, the perspective that it is the consucrat only who needs to adapt, and the discourse around the competence of the consucrat. We should not be too cautious in our approach to consumer representation. Consucrats have agency – what next for the profecrat?

‘Not in the room, but the doctors were’: an Australian story-completion study about consumer representation

Current mental health policy requires consumer involvement in all levels of health service management (i.e. planning, implementation, delivery and evaluation). However, current models often limit consumers to ‘representation’ roles that are criticized for silencing consumer views. This study compares understandings of consumer representatives’ and health professionals’ participation in decision-making processes in the mental health sector in Australia. Story completion methods were employed, with 34 participants (21 consumers, 8 health professionals and 5 people identifying both as consumer and health professional) completing a story stem about either a consumer representative or a health professional changing a committee meeting agenda. Using a thematic approach, three overarching themes were developed: how consumer representative roles remain unvalued, how such lack of value translates to not achieving co-production and how consumer representative roles can be better supported through allyship or subversion against organizational cultural norms. Findings suggest that organizational cultural norms in health settings need to be more inclusive of consumers to maximize the benefits of partnerships and fulfil policy expectations. Two methods for greater empowerment of consumers working in mental health are through allyship with non-consumer health professionals who support the goals of the consumer movement, and subversion of current practices.

Toxic Shock Syndrome, Tampon Absorbency, and Feminist Science

Tampon-associated toxic shock syndrome (TSS) has disproportionately affected women, and specifically, menstruators. By 1980, the Centers for Disease Control recommended that women limit their use of superabsorbent tampons since the risk for TSS increased with greater levels of absorption. However, women had no way of following this advice since products did not have consistent absorbency labels. A standard to set absorptive capacity as well as nomenclature was required, and the consensus process to do so was governed by ASTM (American Society for Testing and Materials). Esther Rome from the Boston Women's Health Book Collective participated as a consumer representative, and solicited feminist scientist Nancy Reame to help generate data on their behalf. Importantly, they rejected the use of blue saline and "blue goo" as a menstrual fluid in the syngyna—the synthetic vagina simulacrum lab instrument—to test tampon absorbency, and insisted upon heparinized blood instead. They challenged the process by which a standard is established, the method by which variables are controlled, and the erasure of menstrual fluid from tests about tampon absorbency. The feminist science yielded both usable and valid outcomes, with results that challenged the design of the experiment upon which standards were to be based.

Effect of a maternity consumer representative training program on participants’ confidence and engagement

Objective This paper describes the effects of a maternity consumer representative training program on participants’ confidence to fulfil this role and engagement in representative activities. Methods The present study was a descriptive, pre–post evaluation design with a 3-month follow-up. Fifty-eight people completed the program and 55 agreed to participate in the evaluation. Participants completed questionnaires to assess confidence to undertake consumer representative roles and reported on their engagement with consumer activities. Results Participants’ perceived confidence to function in the role of consumer representative differed significantly before and after the workshop (F(2,18) = 7.057, P < 0.001), as did confidence in decision making (F(2,16) = 7.615, P = 0.005), confidence in negotiating outcomes and liaising with key people (F(2,18) = 7.154, P = 0.005), and confidence in making use of relevant networks (F(2,18) = 4.319, P = 0.029). There was a decline in confidence at 3 months, with confidence at this time no longer significantly different from that at the time of recruitment. Engagement with consumer organisations increased by 45% compared with rates at commencement of the project. Conclusions The program enhanced participants’ confidence to fulfil a maternity consumer representative role but was not sustained. Further research is needed as to how to best support maternity consumer representatives and assess their contribution to promoting woman-centred care. What is known about the topic? Engaging consumers in the development of health policy, planning, service delivery and review can improve services and health outcomes. There is a serious lack of consumers confident to undertake representative roles. There is a paucity of evidence about the best ways to engage and build capacity among prospective consumer representatives. What does this paper add? A training program was developed and implemented for prospective consumer representatives in maternity services. Participants reported enhanced confidence to undertake a consumer representative role, but this was not sustained at the 3-month follow-up. The program improved engagement with consumer representative activities. What are the implications for practitioners? Training and support are essential for effective maternity consumer representation. Programs could involve generic consumer training with additional training offered for specific health services, such as maternity, aged care or mental health. Further attention needs to be given to supporting consumer organisations and consumer representatives in rural and remote areas. There is a significant need for health service committee members to be supported to work effectively with their consumer representatives.

Concerns about being a a Health Consumer Representative: Results of a South Australian Study on Consumer Perspectives

Community and consumer participation is strongly advocated as a way to help shape health systems and health services to become more inclusive, accountable, responsive to community and consumer needs, and to improve health outcomes. Involving consumer representatives on committees is one partnership-style method of bringing a consumer perspective into health system and health services decision-making processes. Many consumer organisations are invited to provide consumer representatives to be members of committees. A study was conducted to identify the concerns of health consumers when they are required to take on the role of being a consumer representative on committees. Focus group interviews were conducted using a series of scenarios and questions as a discussion guide. Forty-eight participants were involved in eight focus group interviews in metropolitan and regional South Australia. General concerns covering seven key areas emerged, as well as more specific concerns relating to particular roles representatives may be required to undertake. This study highlighted particular areas of concern for consumer representatives that can be utilised in developing supports to increase consumers' effectiveness, capacity and confidence to fulfil the representative role. It also highlighted that the capacity building process for consumer participation needs to be a joint partnership between the health sector and consumer organisations, rather than be seen as solely the responsibility of individual consumer representatives.