Mental health research priorities in Australia: a consumer and carer agenda

The importance of consumer and carer involvement in mental health research is well established [1‐8]. In Australia, the Statement on Consumer and Community Participation in Health and Medical Research outlined the importance of consumers and the community playing an active role in health and medical research [9]. Growing acceptance of the mental health recovery movement creates a solid foundation for consumers and carers to move beyond tokenistic or advisory modes of participation and into meaningful and effective involvement [10].

Internationally, these efforts have increased the consumer and carer voice in priority-setting [7]. For example, the James Lind Alliance initiative (based in the United Kingdom) and the Roadmap for Mental Health Research in Europe project have included consumers, carers and other stakeholders in large-scale priority-setting exercises for research into specific disorders and mental health more generally [11, 12]. However, published examples of consumers and carers defining the research agenda and actively participating in research in Australia are limited [10]. Although the research community uses a number of priority-setting methods, consumer and carer perspectives remain largely absent in mental health research priority-setting [3]. Given their unique and valuable perspectives in identifying areas and issues of emerging importance [3], or those that have otherwise been overlooked [2], consumers and carers have much to contribute with significant capacity for leadership in this space [13].

ACACIA – The Australian Capital Territory (ACT) Consumer and Carer Mental Health Research Unit – at The Australian National University (ANU), was established in response to the need for consumer- and carer-led collaborative research. ACACIA aims to enable consumers and carers to take an active role in relevant, high quality mental health research [14]. The Unit is led and staffed by researchers with lived experience as a consumer or carer who facilitate the engagement of consumers and carers from the community in the work of the Unit, and bridge the often difficult gap between academia and mental health communities [6].

A key objective of ACACIA is the collaborative development of a research agenda to address consumer- and carer-identified issues, such as service gaps in the ACT and Australia more broadly. This paper reports the findings from two consecutive studies to address this objective, namely a face-to-face discussion forum to develop topics and set initial priorities (Study 1) and an online survey to extend and update priorities (Study 2).

The ethical aspects of the research were approved by the ANU Human Research Ethics Committee (protocol number 2013/388). All participants provided written or online informed consent.

The current study identified a broad range of topics for future mental health research, reflecting the extent of the perceived gaps in the Australian mental health sector. Although there were some group differences and no clear priorities emerged in either research study, many topics amongst the highest-rated were in the area of service organisation and delivery, particularly related to trauma- and recovery-oriented care and peer leadership. The importance of lived experience of mental health issues (as a consumer and/or carer) for the development and evaluation of services and policy was also a focus, particularly for survey participants, and across both studies there was interest in research into recovery for consumers and carers.

This research both confirms and extends the outcomes of previous consumer and carer mental health research priority-setting exercises. Many research priorities developed by participants in Study 1, such as support for transitions between services, medication and alternative treatments [7, 21], stigma [8, 21], support for carers [21], and communication with health professionals [21] are consistent with prior research conducted in other countries. The topic areas of focus, including recovery [21], service delivery [21] and the active involvement of consumers have also been found previously [8]. The findings are similarly consistent with previous Australian research priority-setting work, in which consumers prioritised research into medication and treatment, effective coping strategies/recovery and quality services [2, 3]. However, the topics developed and prioritised across both studies in the current project reflect specific contemporary issues in these areas. For example, many participants were aware of international evidence for mental health peer work and the spread of peer services in Australia; therefore, their suggested topics were focused on implementation and evaluation of best practice in the Australian context, including peer leadership in service delivery. The strong interest by participants in the effect of the recently introduced NDIS, particularly regarding how it affects service availability for those ineligible for the scheme, is also a critical area of concern in the Australian system, although the system-level analyses of interest may also have relevance for other countries in Europe and North America that have introduced similar broad-ranging changes to the financing and organisation of care for people with long-term disabilities [22].

The contemporary and nuanced views on research priorities demonstrated by consumers and carers, along with the changes in emphasis that occurred in the 4 years between studies, highlight the importance of regular updates to priorities that are not confined to rating pre-existing researcher-developed topics. For example, in Study 1 of the current research, topics focused on trauma were discussed widely across groups and rated highly by both consumers and carers, albeit by a small number of votes overall. Trauma-informed care refers to mental health care which acknowledges the impact of previous psychosocial violence, abuse and trauma on the consumer and is sensitive to these experiences [23]. However, trauma-related service delivery was not amongst the highest priority topics in the national survey conducted four years after the first study. This may reflect differences in focus across communities. For example, there may have been a pre-existing emphasis on trauma-informed care within the local ACT consumer network from which participants were recruited for Study 1. Alternatively, this may reflect a recent broader shift in the focus of both service delivery and the consumer movement given that the impact of previous trauma on mental ill health has become increasingly well recognised over time [24].

Although participants across both studies embraced the opportunity to develop research topics, the majority of topics were negatively skewed as participants rated most topics as ‘high priority’ overall. Participant comments in both studies suggested that this reflected the view that everything was equally important. They found it challenging to prioritise some topics over others, commenting that it was difficult to choose between numerous competing priorities. However, it is also possible that a different choice of response style (e.g. forced choice of a limited number; consensus method) may have produced different results. These methods were discussed, but considered less desirable by the ACACIA Advisory Group. Difficulty selecting priorities is an observation also reported in several previous research priority-setting projects [2, 3, 21]. Like the present project, these projects all enabled participants to independently select, rank or vote for personal research priorities [2, 3, 21]. In contrast, methods that require a small group of participants to make a collective decision about priorities, such as the James Lind Alliance approach, have produced ranked lists of priorities [7, 12]. This discrepancy is an important consideration for future priority-setting exercises and suggests that there are a diverse range of research topics of high importance to consumers and carers. This apparent lack of consensus presents a challenge for researchers seeking guidance on where to start in implementing a consumer- and carer-led research agenda. However, within ACACIA, consumers and carers also provided a solution to this dilemma – they suggested that the breadth of priorities reflects the equal importance of all of the topics developed, and research into any of them will address an important gap in the system [14]. Consumers and carers have identified what they need mental health research to address; it is now up to researchers to work in partnership with consumers and carers to implement the agenda.

Consumers and carers consider many topics important targets for research, suggesting a strong understanding of the Australian mental health system and its failures as discussed in a recent commentary [25]. Consistent with this, in the current study, topics focused on services, particularly the organisation and delivery of care, were seen by consumers and carers as some of the most important on which to focus. People with a lived experience of mental health issues are ideally placed to identify inadequacies in the mental health care system, and have a strong desire for active involvement in addressing these challenges. There is a need to engage in an ongoing research partnership with consumers and carers to ensure that their views are at the forefront of research, and to regularly update research agendas to ensure they are responsive to current consumer and carer priorities. Taking this collaborative approach will move mental health internationally to the forefront of co-designed and co-delivered health systems.