Consumer participation in mental health research.

• Author: Phillips, Ross

Abstract

This paper explores the movement of consumer participation in mental health research, and presents the argument that active consumer participation can produce better and more ethical research. The implications of this for social research and possible models of consumer participation in research are discussed. The paper then highlights the impacts of this type of research on policy: that policymakers need to build the requirement for inclusive research practices into new policy, and that policy development needs to be informed by research that is conducted with a substantial degree of consumer participation.

INTRODUCTION

The field of mental health research has a chequered history in which people with a mental illness have been the unsuspecting victims of morally and ethically corrupt practices (Frese 2002). As late as the 1990s research practices have been documented where intentional substantial harm occurred to unwitting participants (Frese 2002). Fortunately, there is a growing emphasis on more inclusive and participatory approaches to research (Beresford 2002).

The catch cry "Nothing about us without us" reflects the growing expectation--both from within the disabled peoples movement and from many other marginalised groups within societies--for service-user involvement at all levels of social service delivery. The pressure for involvement and participation also applies to the practice of social research.

This paper will explore the implementation of consumer (1) participation and involvement within mental health social research. It will do this by briefly examining the principles of consumer participation and by analysing the reasons for its promotion as a necessary aspect of social research. These reasons are very much founded on ethical issues, which this paper will subsequently explore. The movement of consumer participation within social service delivery is challenging and reshaping social research, and the ways in which this is happening will be evaluated by reviewing a number of different models of consumer participation within research. Finally, the implications of these shifts for policymakers will also be discussed.

CONSUMER PARTICIPATION--THE ONSET AND THE IMPLICATIONS

Consumer participation has become one of the formal principles of social services (Beresford 2000). Over the past few decades a shift in focus has occurred within mental health service delivery away from a paternalist "profession knows best" approach.

Personal narratives and individualised experiences of people with a mental illness have become validated as a result of both changes in political ideology (i.e. policies of de-institutionalisation and community care) and a growing sense of self-identification among consumers. Opposition to the pre-eminence of psychiatric thought and treatment developed as evidence began to emerge of some of the harm and negative influence that this thought and treatment conferred (Frese 2002). This growing awareness and "owned knowledge" is paralleled in post-modernist thought that highlights concepts of difference, subjective realities and a redress of rationalist assumptions about knowledge and universal truths (Croft and Beresford 1998). In addressing and dismantling the meta-narrative that held that persons experiencing mental illness lack the ability to control their lives and require "professional service delivery" (in its myriad forms), service users began to describe and own their knowledge and discourse.

Interestingly, the documentation of this knowledge often escapes the domain of recognised academic literature within the field (Epstein 2002). This knowledge, referred to by Beresford (2000:493) as "hidden users knowledge", comes in the form of user wisdom, advice and learning. While Beresford (2000) states that this knowledge is becoming ever more available in different forums, it is still essentially devalued by dominant professional discourses as lacking in professional integrity and authority.

The implications of the emergence of consumer participation for consumers, healthcare professionals and policymakers have been far reaching. Mental health services cannot (contractually) design or deliver services without transparent and clear processes that indicate consumers are involved in the planning, implementation and evaluation at every level of the service (Ministry of Health 1997). Thus, services have a new sense of moral obligation (not to mention a legal and contractual framework) to ensure that the person being served is central to the purpose of interventions.

The same implication exists for social research, although some commentators maintain that advances in consumer participation in research have been slower and more laboured compared to service delivery (Champ 2002). Parallel discussions are occurring about the similarities between the pressures that shaped and gave rise to consumer participation in service delivery and those that are shaping social research (Beresford 2002). Those pressures can be described as reactions to exclusionary practices (and policies), marginalisation, stigmatisation and oppression. A lack of authoritative "voice" for consumers in setting research agendas, or in any aspect of research processes, directly contributes to these aspects of their experience.

A SHARED EXPERIENCE

Many people with experience of mental illness have also experienced social exclusion, marginalisation and a loss of their dignity, freedom, control and civil and human rights (Healy 1996). Other groups in society--such as women, indigenous and minority ethnicities, and people with disabilities--have had similar experiences. In this respect, many of the themes that emerge as requiring ethical redress for mental health consumers are also relevant for other marginalised groups.

The common experience of research for these identified groups parallels their experiences within society. That is, they have not been collaborative partners at any stage of the research process. They have not always experienced control and ownership over the direction of research. Indeed, the disabled peoples movement (on which many of the principles of the mental health consumer participation movement are modelled) is said to have been influenced by the critical social research of the feminist, Black and educationalist writers who have all rejected the traditional research requirements of objectivity, neutrality, distance and an empirical definitive (Beresford 2002).

A consistent argument made among these groups concerns the dilemma of who owns the knowledge from research and what benefit the research offers for those being researched (Beresford 2000, 2002, Cram 2001, Kirkman 2001). Champ (2002) describes this process (the subjugation of knowledge) as the colonisation of the...