Abstract
Increasingly, articles advocating active consumer involvement in the research process are appearing in influential journals such as the British Medical Journal and the British Journal of Psychiatry [1–7]. Moreover, the National Health and Medical Research Council (NHMRC) and the Consumers' Health Forum of Australia (CHF) have recently released a Statement on Consumer and Community Participation in Health and Medical Research recognizing both ‘the contribution that consumers can make to research and their right to participate in research’ [8], p. vii]. Clearly, the concept of active consumer involvement is one that psychiatric researchers can no longer ignore.
What is a ‘consumer’?
The NHMRC and CHF define consumers as: patients and potential patients, carers, organizations representing consumers' interests, members of the public who are targets of health promotion programs and groups asking for research because they believe that they have been exposed to potentially harmful circumstances, products or services [8], p. vi].
This is a broad definition that potentially encompasses the entire population. In contrast, in this paper, we use the term ‘consumer’ to refer to people who suffer or have suffered from a mental disorder. We acknowledge that the term is not ideal and that alternative descriptors have been suggested by others (e.g. users, citizens, patients, sufferers, survivors, customers, and psychologically diverse citizens). However, each term has its limitations [9] and none is clearly superior, for our purposes, to the more commonly used term ‘consumer’.
What is ‘consumer participation’?
Until recently, consumers have been seen as the passive objects of health research rather than active participants in the process [8], p. 4]. However, according to the NHMRC and CHF [8] statement on participation, ‘real participation implies sharing of decision-making power’ (p. 3). According to the statement, such participation may occur at a number of different levels and stages of the research process and it may include consumer research undertaken ‘by or with consumers, arising out of consumers’ needs' (p. 7). The Index Medicus also defines consumer participation (or ‘consumer involvement’) as ‘community or individual involvement in the decision-making process’. Throughout this document, the phrase ‘consumer participation’ is used according to these definitions.
What can consumers contribute to the research process?
Quantitative surveys of stakeholder priorities for mental health research have shown that researchers and consumers differ in their priorities for mental health research [10]. However, if research is to contribute to better mental health outcomes, it must address the questions that are of most concern and relevance to consumers [1], [3], [4], [11]. Accordingly, we need consumers to provide input into which questions are relevant [1], [3]. Consumers are also well placed to indicate whether research protocols are appropriate and likely to be acceptable to other consumers [1] and to provide insights into the interpretation of research results [1], [3]. Finally, consumer involvement may facilitate the recruitment of other consumers to research projects [3], place consumers at ease during the conduct of a project [12] and improve the dissemination [1], [12] and implementation [3] of research findings. Significantly, researchers who worked with consumers conducting randomised controlled trials have reported that consumer input improved the design, conduct and interpretation of health intervention trials [5].
The concept of the academic consumer researcher
I have tried, as best I could, to use my own experiences of the disease to inform my research, teaching, clinical practice and advocacy work. (Kay Jamison [13], Professor of Psychiatry, Johns Hopkins School of Medicine)
To date, discussion about consumer participation in the health research process has been largely confined to a consideration of the role of nonacademic consumers in research. Researchers have been artificially dichotomised as either ‘professional researchers’ (individuals with research and/or health qualifications and experience in the field of health research) or ‘consumer researchers’ (defined as ‘people with little or no formal training and experience in doing research’) [14], p. 380]. There has been little or no recognition in the literature on consumer participation of the particular contributions that academic consumers with formal qualifications and research experience can offer. This is somewhat surprising given that academic consumer researchers (ACRs) offer a number of the advantages associated with lay consumer participation as well as some unique advantages. Moreover, there are some notable examples of academic researchers with a history of mental illness who have made significant contributions to consumer-orientated mental health research and advocacy, including the prominent US psychologist Professor Kay Jamison [15], well known Australian academic Dr Meg Smith [16] and US-based consumer/survivor researcher, Dr Jean Campbell.
What can ACRs contribute to the research process?
Academic consumer researchers are not a substitute for lay consumer input into the research process (see discussion to follow). However, a critical mass of ACRs could offer a number of advantages.
Overcoming barriers to consumer participation
Entwistle and her colleagues have pointed out that consumer participation in research ‘is not welcome universally’ among researchers [1]. Indeed, recent research has demonstrated that while consumers place a high priority on the involvement of consumers in the mental health research planning process, this view is not shared by researchers, panels that assess research grants, senior mental health policy makers, general practitioners and a range of mental health professional groups [10]. These attitudes are likely to represent significant barriers to the full participation of consumers in research, at least in the short term. This is not an issue for ACRs who by virtue of their training and employment are already full participants in the research process.
Previous research training
Academic consumer researchers are already conversant with scientific terminology and methodology that at times may be overwhelming to consumers without formal training [17], which in turn may be a source of concern to academic researchers [5]. In prioritizing the type of research that should be conducted, researchers rate the quality of research as significantly more important than do lay consumers [10]. Due to their training and acculturation as researchers, ACRs are also likely to value and conduct high quality research.
Full partners
Problems of imbalance of power [14] and tokenism [18] may undermine consumer attempts to influence the research process. This is likely to be less of an issue for ACRs.
Access to funding
Like their non-consumer counterparts, ACRs can obtain academic appointments in research institutions that will pay their salaries as independent investigators and support their participation in the research process. By contrast, there are currently few opportunities for lay consumer researchers to secure paid positions that will enable them to devise and conduct their own research. By virtue of their training and affiliations, academic consumer researchers may also be better placed than lay researchers to obtain competitive funding for their research.
Disseminating research findings
Lay consumer researchers may have difficulty disseminating the results of their research in a form that will influence mainstream researchers. By contrast, ACRs are familiar with the procedures and are supported by the infrastructure needed to disseminate their own and other consumers' research findings within the academic community. At the same time, ACRs may be more sensitive than their non-consumer colleagues to the information needs of other consumers and hence may be more engaged in actively disseminating their findings widely within the community.
Influence on research policy and funding
Academic consumer researchers are also in a position to influence research priorities by reviewing grant proposals, and sitting on research grant panels and committees that formulate research policy. As Goodare and Lockwood [2] have noted, the task of assessing a research protocol ‘is regarded as all in a day's work’ for an academic, ‘but consumers have to take time off from other commitments and perhaps learn new skills before feeling competent to comment’ (p. 724). Similarly, Oliver from the National Childbirth Trust, has pointed out that the time required to provide input into research matters ‘diverts energy and resources away from our primary purpose of offering information and support to the public’ [19], p. 1320].
Facilitating the participation of lay consumers
Although ACRs can contribute significantly to the research process, they cannot and should not replace lay consumer participation in research. The values and priorities of ACRs may be influenced by the prevailing research culture and hence their perspectives may differ from those of other consumers. Moreover, academic consumers may offer a primarily middle-class perspective on illness and its management. Consumer advocates are experienced in representing the views of a range of consumers and lay consumers may be better placed than academic consumers to comment on the suitability of participant information and on the likely impact of certain aspects of the research protocol on lay consumers. In addition, one hypothesized advantage of participatory research involving lay consumer researchers is to improve consumer quality of life through self-empowerment of the disadvantaged consumer group [6], [7], [14].
However, ACRs have the potential to serve as a bridge between the research and consumer communities, and in particular can facilitate the involvement of lay consumer researchers in the research process. Faulkner and Thomas [4] have argued that in the mental health system ‘there is political resistance to seeing psychiatric patients as experts, and to their involvement as partners in helping to set research agendas’ (p. 1). Academic consumer researchers may be more sensitized to the value of other consumer perspectives and to the advantages of lay consumer participation in research and, in particular, the potential of such involvement to contribute both to better mental health outcomes and the empowerment of their fellow consumers [6], [14]. As a result, ACRs may place a high value on forming research partnerships with lay consumers. They can also assist other researchers to see the value of involving lay consumers in the research process and of the appropriateness of paying them for their expertise. Finally, it has been argued that consumers should have access to training in areas such as ‘the interpretation of statistics’ to ‘develop the necessary skills to support their participation in research’ and protect them ‘against tokenistic involvement’ [8], p. 8]. Academic consumer researchers are well placed to contribute to the design and delivery of such training programs.
Influence on research culture
Academic consumer researchers can influence the beliefs of their academic colleagues about research priorities, mental health issues and consumers. No doubt, there are many ACRs in the research community with undisclosed mental health status who influence their colleagues. However, culture change and the development of new methodologies is likely to occur more quickly and effectively where there is a critical mass of known ACRs who are free to declare their interests and expertise.
Reducing the stigma of mental illness
Prominent citizens such as the actor Gary McDonald have spoken of their mental health problems in a conscious effort to destigmatize mental illness. Given the high prevalence of mental disorders, many mental health researchers must also be consumers. However, rarely do researchers publicly disclose their status as consumers. Their reasons for this are likely to be complex and multifactorial and possibly include fear of stigmatization and discrimination by colleagues, a belief that their problems reflect poorly on their professional expertise as mental health experts, a concern that they can do more good by not divulging their mental health status and a wish to keep their personal life and health private and separate from work. We respect their decision not to disclose such information. Arguably, however, other ACRs who are prepared to identify themselves as consumers may contribute to the process of reducing the stigma of mental illness both within the workplace and at a community level.
A new academic consumer research unit
In recognition of the value of a critical mass of ACRs in mental health, the Centre for Mental Health Research at The Australian National University has recently established a Depression and Anxiety Consumer Research Unit (CRU) comprising qualified researchers who are also consumers. The Unit aims to conduct consumerfocused, high quality research on anxiety and depression, an area that has been shown to be under-researched both in terms of disease burden and health system costs [20]. All ACRs in the Unit have disclosed their status as consumers.
To date, lay consumer participation in mental health research has typically focused on service evaluation or has involved people who have used hospital and rehabilitation services [7],[21–23]. The Unit focuses on mental health in the community and in primary care settings. These settings have been the subject of less published research in Australia than hospital and specialist settings [10] and have been identified by consumers (and others) as of high priority for mental health research [10]. Many people with depression and anxiety do not receive professional help for their problems [24] and only a small minority of consumers who obtain professional help receive secondary or tertiary care services. Thus, the CRU's focus complements existing consumer research and addresses an area of particular need.
Potential limitations of the ACR model
I continue to have concerns about my decision to be public about my illness… I am a scientist who studies and writes about the illness I have and I knew that as a result of my disclosure that my work would be subject to a different kind of scrutiny and not altogether kind. (Kay Jamison [13])
Although there are many benefits of the academic consumer researcher, the model is not without its problems. First, ACRs may be faced with stigmatizing and discriminatory behaviour that they would not encounter as a researcher with an undisclosed mental health problem. Academic consumer researchers' motives and capacities to undertake ‘unbiased’ research may be questioned. They may no longer be viewed as a bona fide researcher while at the same time they are not seen as true consumers. Researchers who are also practising clinicians may fear, with some justification in certain jurisdictions [25], that they will experience problems with licensing boards if they disclose their mental health history. Thus, declaring consumer status may have implications for a researcher's career prospects and personal wellbeing. Moreover, these problems may serve as barriers to establishing a critical mass of consumer researchers.
Secondly, we acknowledge that the ACR model is untested at this stage and although it would appear to offer potential, such potential might not be realized in practice. More generally, it has been noted in a systematic review of consumer involvement in health research that there are few empirical evaluations of the effectiveness of consumer participation and that assessing such effects is likely to be complex and problematic [26]. Such difficulty is evident in the findings of two trials of the effect of interviewer background on user satisfaction with mental health services [22]. Both studies reported lower user satisfaction when the interviewer was a consumer. However, there is no way of objectively determining which of the ratings is ‘correct’ [22]. Even a comparison of consumer mental health outcomes may be ambiguous given that the definitions of what constitutes a good mental health outcome could differ for consumers and non-consumers.
Reviewers and others have raised a number of other concerns about the concept of ACRs. It has been suggested, particularly by non-consumers, that the ACR model could marginalize lay consumers and create two tiers of consumers with ACRs seen as superior to other consumers. This would be inappropriate and counter-productive. It is not our intention. We believe that lay consumers, carers, ACRs and other academics and clinicians can each make important, unique contributions to the research process, and that each group can facilitate the work and involvement of the other. However, this requires mutual respect and understanding, trust and the acknowledgement of the others' expertise. When we established the CRU, we were concerned that the Unit might not be accepted by other consumers. In practice, they have responded with generosity and enthusiasm to the CRU initiative.
Objectivity is highly valued in research. Might not ACRs' consumer status lead to biased design or reporting of research, self-interested representation on public health policy committees and granting bodies, and biased delivery of content in training courses? For example, the academic consumer researcher might choose not to frame questions or report findings that could reflect adversely on consumers. On a grant panel, they might favour proposals focusing on areas of personal interest. Conversely, ACRs' roles as a researchers might compromise their capacity to conduct research from a consumer perspective. For example, the imperative to publish and to obtain grants might affect the questions posed and methodologies employed. The issue of conflict of interest is not uncommon in the field of medical research [27], [28]. As noted by Korn, such conflicts are ubiquitous and inevitable in academic life… Successful scientists cannot be totally dispassionate about their work, nor can academic medical researchers be immune from the jumbled and often intense conflicting pressures that envelop them. These pressures, not primarily financial,… may generate conflicts by creating strong bias toward positive results… [28], p. 2234].
Arguably, they may also affect the behaviour of academics on public policy committees and grant panels. According to Korn ‘the challenge for academic medicine is not to eradicate them, which is fanciful and would be inimical to public policy goals, but to recognize and manage them sensibly and effectively’ (p. 2234). A common method of dealing with potential conflict of interest is to declare that interest. By definition, ACRs are doing just that.
Given the definition of a consumer as someone who suffers or has suffered from a mental disorder, one reviewer of this paper questioned ‘whether someone who is currently suffering from a mental disorder can or should conduct academic research’ particularly given that ‘a general rule of professional conduct is that practitioners should not practice while impaired.’ We would argue that decisions as to fitness to conduct academic research should be based not on a current or past diagnosis but rather on competence to perform the required research role. To do otherwise would be discriminatory and might serve to further stigmatize those suffering from mental illness. Indeed, the RANZCP Code of Ethics states that practitioners should ensure that their mental health enables them to ‘undertake their professional responsibilities competently’ and that they ‘seek appropriate treatment in the event of ill-health which interferes with their professional duties’ (http://www. ranzcp.org/ fellows/code3.htm#1). Thus, the statement rightly makes a distinction between competence with respect to professional duties and the state of mental illness.
It has been suggested that the CRU's agenda is too narrow in that it focuses on depression and anxiety disorders and does not specifically include carers. Although at this stage we believe the impact of the CRU on stigma will be greatest if the staffing of the Unit is consumer-based, many carers are also consumers and carer needs and wellbeing are critical to the wellbeing of consumers. As such, carer needs will be a focus of the Unit in partnership with academic and lay carers. If successful, the CRU may serve as a model for the establishment of other academic consumer research units with a different or broader focus.
Conclusion
In discussing the importance of consumer involvement in research, Faulkner and Thomas have argued that ‘a marriage of two types of expertise is the essential ingredient of the best mental health care: expertise by experience and expertise by profession’ [4], p. 3]. Academic consumer researchers offer both types of expertise. Without doubt, the establishment of an ACR unit is complex, challenging and not without limitations. Nevertheless, we believe that ACRs have the potential to bridge the gap between the academic and consumer communities and to offer much to both. In the process, they will assist psychiatrists and other mental health professionals working at the coalface to answer the questions that consumers most want answered.
Declaration of interest
Dr Griffiths is a researcher, consumer, carer, registered psychologist and the foundation Director of the Depression and Anxiety Unit (CRU) at the Centre for Mental Health Research. She is also on the management committee of bluevoices (the beyondblue consumer/carer initiative), and Chair of BlueBoffins, the bluevoices research subcommittee. Professor Jorm proposed the establishment of the CRU and with Professor Christensen has actively supported the Unit. Both are researchers and carers with clinical and academic qualifications in psychology.
Acknowledgements
This work was funded by NHMRC Program Grant no. 179805. The CRU is supported in part by a grant from beyondblue: the National Depression Initiative.