Involving psychiatric survivors and others with lived experience of mental distress in the development of mental health care policy is clearly a positive step; representing, perhaps, a democratisation of decision making and “sharing of power” between different groups. Such steps are also clearly in line with the spirit of change associated with developing understanding in relation to recovery as a lived personal and political process (Slade & Longden, 2015).
The question emerges however as to how the involvement of survivors in decision making will sit alongside other processes and parties? For example, how does the idea of survivor knowledge interact with the concept of “evidence based practice”; evidence based practice itself is often represented as a hierarchical form of knowledge generation which privileges certain forms of knowledge over others.
The authors of the current paper (Lancaster et al. 2017) seek to advance our understanding in this area through considering the role of “consumers” in the development of Australian drug policy.
The authors set themselves two goals in this paper:
- To see how the idea of “consumer” is considered in relation to discussion around evidence based practice and consumer “participation” in the development of policy;
- To consider how power may be seen as “centralised” through evidence based practice and how resistance to this centralisation may emerge.
To address these aims, 41 interviews were conducted with individuals, from a range of backgrounds, involved in decision making relating to three specific areas of Australian healthcare policy:
- Opioid overdose prevention;
- Extended distribution of clean injecting equipment (needles etc.) through social networks (peer-distribution);
- Developing “recovery” based approaches to drug policy and treatment provision.
Interview participants were involved in at least one of these areas and four participants were interviewed twice, owing to their involvement in two different programs. Participants were drawn from different groups:
- Five policy makers
- Two advocates
- Five non-governmental organisation representatives
- Seven consumer representatives
- Eleven researchers
- Seven clinicians
Areas for discussion during interviews focused on the process of policy development as well as the way that different “voices”, from varying perspectives, were handled in this process. An initially broad analysis strategy was employed in relation to these areas of interest. A repeat analysis was conducted, for the purpose of this paper, focusing in particular detail on the role of “consumers” and the manner in which their voices were heard and considered in the decision making process.
The authors present their findings in relation to two overarching ideas: Enacting difference, constituting “consumers”, and Difference and resistance.
Enacting difference, constituting “consumers”
Under this heading the authors describe how policy making groups were seen as consisting of different pre-existing groups, including consumers, each of which required representation and who could be seen as bringing a different perspective to the process. Consumers were seen as being one of these groups and as offering a perspective that was different, or easily overlooked by other groups. However, the consumer voice was often represented as marginalised, or dismissed as “and all that”, by other participants. Specifically, consumer representatives were seen as constituting a minority group, not holding as much sway as others and at risk of being ignored by “the system”, as opposed to by specific “people”. Consumers were also seen as being “non-professional” (despite the fact that many were there in a paid capacity) and as representing a position that was difficult to incorporate into the main discussion. Indeed, some participants expressed a qualified surprise when consumer representatives were tasked with leading on particular areas of work, even though it was recognised that this was the norm in other areas of policy development.
Difference and resistance
The authors argue that the concept of a “system” of evidence based policy-making developed a process of opposition between consumers and other participants. This oppositional dynamic risked further excluding or marginalising consumer participants from the discussion. To counteract this tension consumers were seen as being required to adopt the language of evidence based practice, and present their own experience in this way: Indeed, representatives were seen as being more credible if they were not “entirely embedded in [their] own lived experience” but were instead able to “think” more like other representatives. A perceived failure to adopt this alternative language was condemned; for example, in the preparation of literature for community sharing which utilised language unfamiliar to “professional” representatives.
The authors conclude that consumer involvement in decision making processes can possibly be seen as a reaction, or resistance, to the emergence of evidence based practice as the dominant voice in policy making. However, they propose that considering how to involve consumers directly is insufficient if approached separately from addressing the idea of how consumer representation is impacted on by the very process of decision making itself. That is, they ask whether approaching representatives of an assumed pre-existing consumer population in this manner risks inadvertently repeating dynamics of marginalisation and silencing of the very people that you are seeking to represent?
Strengths and limitations
This paper represents a theoretically robust exploration of an important area in need of greater social and research understanding. While the focus of the research, on the development of Australian drug policy, may raise questions as to the wider implications of the findings, there is sufficient evidence amongst parallel bodies of research (for example, the recovery literature) to suggest that these findings have an international relevance to different areas of policy.
Implications for practice
Greater involvement of individuals with a wide range of experiences at different levels of support (from individual care through to national policy making) represents an important and essential development for mental health care in the 21st Century. However, as this paper demonstrates, there is a risk that in seeking to widen involvement through the identification of “consumer” or “survivor” groups we risk perpetuating a process of alienation; particularly when the forcing pressure of adopting “technical” language (such as that of evidence based practice) is applied.
Instead, as the authors in this paper argue, we need to think more critically about the process of broadening representation at all levels of social and political engagement. I have seen echoes of these processes in meetings I have attended both as a researcher and psychiatrist; where effort is made to include different voices, including survivors, but where ultimately their participation is limited by the prevailing power dynamic which privileges one particular form of voice at the expense of others.
We need to think more broadly about the way that these important processes can be engaged with. For example, one approach could be to promote or support the development of support structures from a “bottom up” community led perspective, as opposed to a “top down” interdiction.
The emergence of different voices and perspectives into these fields of practice and decision making are to be welcomed (and represent a cause for optimism) however, there is still more to be done if we are to embrace the possibilities of a truly pluralistic approach to understanding and support in relation to personal experiences of mental distress.
Conflicts of interest
Lancaster, K., Seear, K., Treloar, C., & Ritter, A. (2017). The productive techniques and constitutive effects of ‘evidence-based policy’ and ‘consumer participation’ discourses in health policy processes. Social Science & Medicine, 176, 60-68. [PubMed Abstract]
Slade, M., & Longden, E. (2015). Empirical evidence about recovery and mental health. BMC psychiatry, 15(1), 285.
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Useful and thought provoking paper on what might be the involvement of service users in shaping the evidence…