The Extra Bit:
Measuring the Benefit of Consumer Participation
‘The Extra Bit’ Report aims to shed light upon the lack of individual empowerment afforded
to mental health consumers. It is crucial that consumers are encouraged to adopt an
active role in their own treatment. Although many health professionals prefer consumers to
remain passive during the decision-making process, it is nothing short of neglect to
disregard the rights and opinions of the individual receiving treatment. Efficacious
participation has been found to improve overall health outcomes, while also creating a
more cooperative, consumer-friendly system that would enable the health budget to be
allocated more efficiently.
With mental health representing over 10% of community morbidity, it seems reprehensible
that merely 2.41% of the total health budget has been allocated to supporting people with
mental illnesses1. Despite the Senate Select Committee Inquiry into Mental Health calling
for a budget of approximately 9-12% to be assigned by 20122, the current $176m appears
decidedly insignificant in light of the crucial changes that are required. As the proportion of
Australians affected by mental illness has progressively increased from 1995 to 2005 3, it is
of paramount importance that more funding – approximately 15% of the health budget –
be allocated to the mental health sector.
This Report demonstrates the need for considering both professional and consumer
perspectives in regards to treatment. It also presents a detailed discussion of the diverse
ways in which mental health consumers may be effectively incorporated as contributory
participants in the general health system.
We would greatly appreciate any feedback or criticism of the Report. We urge you to
carefully consider the gravity of these issues for the 45% of adult Australians who have, or
will experience, mental illness at some point during their lives 4.
1
http://www.theaustralian.com.au/in-depth/budget/wayne-swan-hails-biggest-health-reforms-since-medicare/storye6frgd66-1225865210435
2
http://www.theage.com.au/opinion/society-and-culture/budget-has-ignored-a-significant-health-need-20100513v1ji.html
3
http://www.abs.gov.au/ausstats/abs@.nsf/mf/4824.0.55.001
4
ABS, National Survey of Mental Health and Wellbeing of Adults, 1997. Accessed via
http://www.blackdoginstitute.org.au/docs/FactsandFiguresfactsheet.pdf.
1
The Extra Bit:
Measuring the Benefit of Consumer Participation
Justice Action Discussion Paper 11/02/11
Index:
1. Evaluating and Measuring Physical Health
a. Professional Perspective
b. Consumer Perspective
2. Evaluating and Measuring Mental Health
a. Professional Perspective
b. Consumer Perspective
3. Forms of Consumer Participation
4. Measurable Benefits of Consumer Participation
a. Specific Advantages of Consumer Participation in Research
b. Specific Disadvantages of Consumer Participation in Research
Introduction
In recent years consumer groups and activists have advocated the importance of
consumer participation and empowerment within the health system to the point where it
has become widely accepted by health authorities. If consumers are given the opportunity
to participate in their own treatment, numerous positive health outcomes may result. A
large percentage of the health budget could therefore be spent more efficiently if plans for
consumer participation and empowerment were put into action. This paper quantifies this
benefit.
It appears many consumers have been largely overlooked in relation to this right to
participate. Concerns and opinions are often disregarded in favour of across-the-board
treatments that may be invasive and even involuntary. Professionals are reluctant to
include consumers in the decision-making process, believing they are not qualified to
participate in the health system or even their individual treatment. This is clearly
inaccurate; after all, medical research itself incorporates the use of placebos to ensure the
patient’s belief in the treatment does not affect the results.5 This is implicit evidence that
consumer involvement has an effect in actual outcomes – one that is intuitively beneficial.
However, there are limited research figures relating to the measurable health benefits of
consumer participation available to consumer groups and the consumers themselves,
despite government expenditure and policy in this area. As found by Crawford et al,
Geers, A. L et al (2005) ‘Goal activation, expectations, and the placebo effect’ 89 Journal of Personality and Social
Psychology, 143.
5
2
research is limited to effects on services and organisational structures: “we were unable to
identify any reports that investigated the effects of involving patients on the health, quality
of life or satisfaction of those using services”.6 Perhaps this is because any further
increase in consumer participation will reduce the professional control of research, funding
and figures.
After several incidents of consumer isolation, the consumer advocacy group Justice Action
released The ‘OUR PICK’ Report, which exposed the powerlessness of health consumers
and particularly those within the mental health system. This paper is a continuation of that
research. Justice Action proposes to use the donations and support stemming from the
release of The ‘OUR PICK’ Report to fund the promotion of consumer participation in the
health system.
In this report, methods of evaluating and measuring physical and mental health will be
examined from the perspective of both professionals and consumers. This will be followed
by a discussion of the available forms of consumer participation in the health system.
Finally, the measurable health benefits of consumer participation will be assessed.
1. Evaluating and Measuring Physical Health
One of the main problems associated with improving consumer participation in the health
system is the difficulty in defining, evaluating and measuring physical health. The concept
of physical health can differ markedly between individuals and groups. For example, a
person who runs a kilometre every day may view a person who does not run at all as not
embodying their concept of good health. This may be despite the fact that that latter
person may have no specific health problems.
Thus, health must be discussed in terms of consistency and measurability. The
perspectives of professionals and consumers must also be examined concurrently and in
contrast to one another.
a. Professional perspective
The question of the constitution of good health is as much philosophical as it is medical
and is certainly not easily answered. However, it may be loosely defined as ‘a state of
complete physical, mental and social wellbeing and not merely the absence of disease’.7
Quantitative indicators in relation to physical health are of course, more practically
observable than those within mental health. For example, the T cell count of a patient will
determine the severity of a HIV infection. Measurements of lung capacity will indicate the
severity of asthma, while blood pressure monitoring accurately denotes risk of heart attack
episodes.
Indicators relating to consumer participation will be difficult to quantify, particularly when
consumers’ participation is not a treatment in itself but a strategy used to give patients
6
Crawford et al (2002) ‘Systematic Review of Involving Patients in the Planning and Development of Health Care’
325 British Medical Journal 2
7
Hamilton, R (2010) ‘The concept of health: beyond normativism and naturalism’, 16 Journal of Evaluation in Clinical
Practice, 323.
3
greater control over the decisions traditionally made on their behalf by medical
professionals.
b. Consumer perspective
Consumers’ perspectives of good physical health will be dependent on different indicators
than those of professionals. Self-appraisal is deliberately subjective and extremely
effective. After all, most health problems are brought to medical attention through selfrecognition of symptoms – when a patient books an appointment with a doctor.
Self-assessment is based on the expectations of the consumer in relation to their
experiences and their surroundings. This may include social and cultural factors which
shape the definition of health in a particular area or community. The media undoubtedly
influences consumer perspectives on health, particularly in relation to such as ideal weight
and appearance.
Consumers generally use comparative methods to evaluate their physical health, by
judging their personal experiences of pain, discomfort or sickness in comparison to
previous experiences or those of others. Therefore, the measurability of physical health for
the consumer will be based on a number of factors. While some observations may be
mistaken or of little importance, self-evaluation remains the fundamental tool for bringing
issues to medical attention and measuring recovery.
2. Evaluating and Measuring Mental Health
If it is difficult to quantify physical health, the challenge of defining what it is to have ‘good’
mental health is even more difficult, which is not confined to the absence of mental
disorders, but also requires a positive state of mind. 8 Mental health is an essential and
integral part of overall health, with the World Health Organization (WHO) constitution
stating that “Health is a state of complete physical, mental and social well-being and not
merely the absence of disease or infirmity.”9 It is a state of well-being in which an
individual realises their abilities, can cope with the normal stresses of life, can work
productively and is able to make contributions to the community. Currently, there is no fully
agreed upon theoretical framework to describe the various dimensions of mental health,
nor a means of reconciling the perspectives of professionals and consumes, which often
differ markedly.
Mental illness impacts on most Australians directly and indirectly at some point in their
lives. While 3% of the Australian population experiencing severe or recurrent illness, up to
45% of Australians experiencing mental illness at some point in their lives. There can be
profound impact on the sufferers, as well as their families and carers. 10
8
Keyes, C. (2005). Mental illness and/or mental health? Investigating axioms of the complete state model of health.
Journal of Consulting and Clinical Psychology, 73, 539-548.
9
World Health Organization (2010). Mental health: strengthening our response.
http://www.who.int/mediacentre/factsheets/fs220/en/ (accessed December 6, 2010).
10
Australian Government: Department of Health and Aging (2008) ‘National Mental Health Policy 08’
4
There are some indicators: social, psychological, and biological, which may be of benefit in
evaluating an individual’s mental health. However, it is important to note that they are not
exclusively indicative of mental health issues. These indicators are:

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Overactive, aggressive, disruptive or agitated behaviour
Non-accidental self-injury
Problem drinking or drug-taking
Cognitive problems
Physical illness or disability problems
Problems associated with hallucinations and delusions
Problems with depressed mood
Other mental and behavioural problems
Problems with relationships
Problems conducting daily activities
Problems with gaining and maintaining employment
Socio-economic pressures and poverty
These areas are represented in the Health of the Nation Outcome Scale (HoNOS). There
are many similar scales, which focus on measuring various aspects of behaviour, physical
condition, social situation and affect. The actual measurement when using the HoNOS is
conducted by a professional but relies largely on input from the consumer. While these
scales can be of significant benefit as an evaluative tool they are limited somewhat
because they are hampered by heir reliance on subjective evaluations and observations.
This does not necessarily mean that they are incorrect, rather that they are difficult to
substantiate and subsequently less difficult to dispute.
a. Professional perspective
Historically, the traditional view of professionals toward mental health consumers was one
of guardianship, characterising consumers as recipients of care that should have little to
no input into how health services were delivered.11
In recent years, the role of professionals in assessing the state of an individual’s mental
health has changed. New mental health policies have been implemented internationally in
recognition of the need to empower those living with mental illness. However, such change
has not been received without opposition. In reality, it appears that the ‘doctor knows best’
attitude towards mental health is still often lurking within the shadows.
Such an issue is clearly evident in psychologist David Rosenhan’s 1973 experiment,
where nine mentally healthy individuals (including Rosenhan himself) gained admittance
into different psychiatric hospitals after presenting false psychotic symptoms (auditory
hallucinations)12. Rosenhan’s aim was to examine whether the staff discovered the
difference between the pseudopatients and the mentally unhealthy patients within the
hospital. After being admitted, the pseudopatients were instructed to behave as they
normally would, and speak to staff and fellow patients as they would ordinarily. Rosenhan
11
Browne, G and Hemsley, M (2008) Consumer Participation in mental health in Australia: what progress is being
made? The Royal Australian and New Zealand College of Psychiatrists, 1.
12
David L. Rosenhan, “On Being Sane in Insane Places,” Science, Vol. 179 (Jan. 1973), 250-258
5
reported that once the patients were labelled as having schizophrenia (after the initial
interview), this label stuck, and no amount of normal behaviour saw its removal.
Physicians sought out confirmatory evidence for their diagnosis, and attempted to fit the
pseudopatients personal histories to that diagnosis. Furthermore, all patients engaged in
the activity of writing – a behaviour that would be considered largely normal and mundane
outside the mental hospital: writing. The hospital staff, however, described the behaviour
as pathological, and surmised that the consistent note-taking must be a manifestation of
psychological disturbances.
This research shows, among many things, that professionals entrusted to treat mentally
unhealthy consumers do not deserve the absolute power over the care of the consumer
that has been given to them. It suggests that they are driven to self serving diagnoses that
immediately brand consumers, who seek help from them as mentally ill. To avoid the
discriminative behaviour seen in the above experiment, a balance must be reached
between physicians and consumers with respect shown to each party. Such balance and
respect cannot be achieved when the consumer has no rights regarding their own
treatment and care.
Bassman13 suggests that public sector mental health care is shifting towards a more
consumer-driven and cost effective model, and that the expenses in relation to perceived
outcomes of treatment strategies are certainly considered by both professionals and policy
makers.
Numerous diagnostic tools have been adopted to assess mental health consumers on a
broad scale, such as the Mental Health Outcomes and Assessment Tools (MH-OAT) tests
used in NSW forensic hospitals. Such tests are essentially modules, which standardise
documentation and assessment processes. Another example of diagnostic tools is the
Quality-Adjusted Life Year (QALY) test that has been adopted across the UK in recent
years to assess both the effectiveness of treatments in relation to life expectancy and
symptoms in concurrency with cost effectiveness.14 However, no definitive objective test
currently exists that can explicitly determine the state of a consumer’s mental health.
Psychiatrists make judgements on a consumer’s mental health by utilising their training,
experience and intuition. These subjective assessments are imperfect and may be
influenced by intrinsic and extrinsic factors which include: 15
 The diagnostician’s physical state during examination (fatigue or illness)
 An emotional reaction evoked in the clinician from their own past experience
(countertransference)
 Cognitive limitations that limit the number of diagnostic hypotheses that the
clinician can consider
 Lack of a systematic inquiry plan
 Failure to test all hypotheses in an impartial manner
 Failure to refine or discard hypotheses in accordance with the evidence
 Clinicians’ natural inclination to pursue confirmatory over disconfirmatory
evidence
13
Bassman, R. (1997). The mental health system: experiences from both sides of the locked doors, 28 Professional
Psychology: Research and Practice, 239.
14
Phillips, C. (2009) ‘What is a QALY?’. What is…? series.
http://www.medicine.ox.ac.uk/bandolier/painres/download/whatis/QALY.pdf (accessed December 6, 2010).
15
Psychiatry.HealthSE.com (2005) ‘Current Diagnosis & Treatment in Psychiatry’,
http://psychiatry.healthse.com/psy/more/flaws/ (accessed December 8, 2010)
6
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Reluctance to commit to a diagnostic conclusion
A number of projective diagnostic tests have been used to assess mental health since the
twentieth century. Projective tests involve the clinician showing an ambiguous stimulus (for
example, a picture of a family or a sentence to complete) to a patient. The patient’s
response will supposedly reveal subconscious emotions and conflicts, which will then
assist the clinician in their diagnosis. In the 1960s the Rorschach (‘ink blot’) test was the
most widely used projective test. 16 However, in popular culture, the Rorschach test is
thought to be a definitive diagnosis of one’s mental health, and its popularity is still seen
today, with 43% of clinical psychologists reporting that they ‘frequently’ or ‘always’
administer the test17. No objective criterion on which to measure the patient’s response
has been developed for the test; the psychological interpretation is entirely subjective and
absolute power is given to the clinician. Subsequently, no consumer input is taken into
account when using a projective diagnostic test.
With this said, the Rorschach inkblot test has a number of inherent problems that have
been debated exhaustively amongst professionals. Research has shown that different
cultures (for example, African Americans, Hispanics and Native Americans) score
differently on the Rorschach18. This presents an issue of the reliability of the test due to the
lack of cross-cultural norms and appropriate normative data; scores on the Rorschach
have not been systematically analysed for bias between ethnic groups, thus the validity of
this projective test is unclear. Furthermore, correlations between the Rorschach test and
particular psychological disorders, such as Posttraumatic Stress Disorder, Dissociative
Identity Disorder or Major Depressive Disorder, have not been well demonstrated19. Thus
it can be seen that projective tests, which show an inherent lack of power given to the
mental health consumer, are flawed in their diagnostic criteria. To gather a complete and
accurate picture of the consumer’s mental health, personal input from the consumer is
invaluable, and their views and choices must be taken into account.
Difficulty still remains in measuring mental health in relation to quantifying an individual
experience in any consistent and meaningful way. Even experts concede that such tools
are often inconsistent and discarded as ‘irrelevant’ to many cases. Uncertainty of
predictors and accuracy due to the complex nature of human behaviour makes any
measurement of mental health difficult; however, this should not be used as an excuse to
allow arbitrary decision-making to take place.
In summary, there are a number of aspects of these issues that need to be addressed in
the future, including:
 Professional responses and resistance to consumer and carer involvement
 A development of a clear picture of the diagnostic tools used in mental health
assessments and service delivery
Chapman, Loren J and Chapman, Jean (1982), ‘Test results are what you think they are’, in Tversky and Kahneman,
Judgment under Uncertainty: Heuristics and Biases, Cambridge 238–248.
17
Lilienfeld, S. O., Wood, J. M., & Garb, H. N., (2000). The Scientific Status of Projective Techniques. Psychological
Science in the Public Interest, 1, 2, 27-66.
18
Wood, J. M & Lilienfeld, S. O., (1999). The Rorschach Inkblot Test: A Case of Overstatement?. Assessment, 6, 341.
19
Wood, J. M & Lilienfeld, S. O., (1999). The Rorschach Inkblot Test: A Case of Overstatement?. Assessment, 6, 341
16
7
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The reasons behind the persisting view of many professionals that involuntarily
committing an individual is essential and necessary for treatment20
b. Consumer perspective
Mental illness clearly impacts on many people other than those that experience it first
hand. Having a mental illness is deeply personal and the individual is often situated in the
best possible position to know the degree to which they are affected. Because consumers
are in the unique position of understanding mental illness at this personal level, their
contribution to the development of improved services to meet their own needs is critical. 21
Traditionally, the assumption of providers of clinical services has been to hold sole
responsibility of the care and treatment of clients, with the clients themselves having little
opportunity to express their autonomy. The movement to increase consumers’
involvement in their own treatment and care is born largely from problems within a system
that prevents consumers from exerting their influence on available services.
The Accreditation Council on Service for People with Disabilities suggests that users of
mental health services have indicated they need: personal goals, choice, social
interaction, relationships, constitutional and human rights, dignity and respect, health, a
decent environment, security, personal satisfaction and hope to assist them in their
journey.22
A 2003 study interviewed fifteen mental health consumers in regards to their opinions of
mental health services and their personal contribution to these services. It was agreed
upon by all that the individual consumers must have a choice to participate at any level
within the service system, and that this choice must be dependent on their ability to do so
at the time.23 Similarly, it was opined that providers should assume more responsibility to
ensure the involvement of consumers, including developing processes for consumers to
express an interest in participation.
Furthermore, consumers have indicated that outcomes of mental health treatments are
largely judged by their ability to deliver a better quality of life rather than a reduction in
symptoms.24 This is a significant finding as to the values and preferences of consumers
themselves regarding their own treatment, and may or may not be taken into account by
professionals when objective assessments are used.
While professionals rely largely on surveys and scales such as the Positive and Negative
Affect Schedule (PANAS) to evaluate the mental health of an individual, these scales rely
substantially on self-reporting by the consumer25. A problem associated with self report
20
Chamberlin, J. (2005). User/consumer involvement in mental health service delivery, 14 Epidemiologia e Psichiatria
Sociale, 14.
21
Lammers, J. & Happell, B. (2003). Consumer participation in mental health services: looking from a consumer
perspective. Journal of Psychiatric and Mental Health Nursing, 10, 385-392
22
Bassman, R. (1997). The mental health system: experiences from both sides of the locked doors, 28 Professional
Psychology: Research and Practice,240.
23
Lammers, J. & Happell, B. (2003). Consumer participation in mental health services: looking from a consumer
perspective. Journal of Psychiatric and Mental Health Nursing, 10, 385-392
24
Bassman, R. (1997). The mental health system: experiences from both sides of the locked doors, 28 Professional
Psychology: Research and Practice,240.
25
Watson, D., Clark, L. and Tellegen, A. (1988). Development and validation of brief measures of positive and
negative affect. Journal of Personality and Social Psychology, 54, 1063-1070.
8
data is the possibility for inaccuracy, due to subjects either reporting what they believe the
administrator expects to see, or report what reflects positively on their mental state.26 This
indicates the essential nature of the consumer’s input into evaluating and measuring
mental health.
Furthermore, professionals rely substantially on cues given in interviews by consumers to
assess mental health issues. It is clear that only through a balance of the perspectives of
both consumers and professionals will the consumer achieve recovery through learning
and acceptance.
3. Forms of Consumer Participation
The World Health Organization identifies patient empowerment as a new concept in
healthcare that is also related to patient safety. This identifies that an understanding of the
importance of patient empowerment is integral to maintaining health care standards
across the world.27
Consumer participation in health care is essential if the delivery of health services is to be
equitable, transparent and effective. It provides quality assurance, accountability and
direction to the planning and delivery. Consumer participation means empowering
consumers to have control over their lives, allowing consumers to be involved in every
aspect of operations from governance to day-to-day management, two-way respect and
mutual learning, consumers being a part of the solution, and should be an on-going
process. 28 This section of the report explores the different ways in which consumers can
be involved in health services. Some of the ways discussed below include consumers
being given a choice between treatment options and consumer involvement in research.
Consumers should be given a chance to communicate more often with professionals in
order to improve understanding between both parties. Professionals can then design the
best treatment program for consumers. Essentially, “consumers have a democratic right to
exercise a voice about their health treatment”.29 However, “there is resistance to consumer
participation in mental health” (Roper, 2003, p.4) as the bureaucracy is unwilling to change
the existing system. 30
In 2006, the Victorian Government published the ‘Doing it with us not for us – Participation
in your health service system 2006-09: Victorian consumers, carers and the community
working together with their health services and the Department of Human Services’ policy
as a commitment to involve the public in policy making about health care services. 31
Furthermore, at a national level, consumers and carers have been included in every
planning group established since the implementation of the National Mental Health
26
Yu, C. H. (2010). Reliability of self-report data. http://www.creative-wisdom.com/teaching/WBI/memory.shtml
(accessed December 6, 2010.
27
World Health Organisation (2009) ‘WHO Guidelines on Hand Hygiene in Health Care’.
28
Health Issues Centre (2003). ‘Consumer Participation – April 2003 Forum’
29
Draper, M (1997) ‘Involving Consumers in Hospital Care’ Commonwealth Department of Health and Family
Services.
30
Roper, C (2003) ‘Consumer Participation in Mental Health: We Want It!’, Health Issues, 74, p.19-22
31
Victorian Department of Human Services (2006). ‘Doing it with us not for us’
http://www.health.vic.gov.au/consumer/downloads/do_it_with_us.pdf. (accessed December 6, 2010).
9
Strategy. Funds have been allocated in order to strengthen consumers’ voice in the mental
health market. 32
There are numerous ways consumers may become involved in their health treatments and
the decision-making process. This includes:
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Consumer advisory involvement: consumers can represent a group of stakeholders
to put forward opinions that will add extra values into the research progress.
Consumer consultation: consumers can be consulted for specific advice. This is a
form of recognition of the significance of consumer participation in the mental health
field.
Consumer collaboration: This will require consumer and non-consumer researchers
to collaborate throughout the research process to evaluate, design and plan for a
better mental health system.
Consumer-led involvement: Consumers have the right to influence policy and can
advance their own agenda. This is not to imply the research will be limited to
consumers but provide direction for the research team.
Awareness programs: Consumer involvement may include the encouraged
recruitment of participants and raise awareness as to the significant role they may
take in the development of the health system.
The consumer’s own treatment worker can be chosen by the individual, and, if
necessary, the consumer can have the power to request a change of worker
Consumers must have detailed knowledge of the complaint procedures within the
existing mental health system
4. Measurable Benefits of Consumer Participation
It is a fundamental right for consumers to be participants in policy that affects them.
Consumer participation delivers measurable benefits and positive outcomes to both the
individual and the system as a whole in a number of ways. Patient empowerment
improves the effectiveness of health systems, particularly when adopted among
indigenous people, HIV sufferers and the mentally ill. Empowerment programs are said to
place patients in helping roles that enhances their social support, quality of life and can
assist in developing policy change33.
One treatment strategy, which fosters an approach that encourages consumer
participation, is “Assertive Community Treatment (ACT)”. ACT has had significant success
in producing measurable health benefits for consumers, which can be replicated.
Randomised controlled trials have been carried out on the efficacy of ACT and revealed
that this form of treatment reduced symptoms and also the reliance on hospital-based
mental health treatment for participants 34. Rozen (2007, p.6) emphasises the importance
Consumer Focus Collaboration (2001). ‘The evidence supporting consumer participation in health’
http://www.healthissuescentre.org.au/documents/items/2008/08/226174-upload-00001.pdf. (accessed December 6,
2010).
33
Wallerstein (2006). ‘What is the evidence on effectiveness of empowerment to improve health?’ WHO Regional
Office for Europe (Health Evidence Network Report) http://www.euro.who.int/Document/88086.pdf
34
Rozen, A. (2007). Assertive community treatment: issues from scientific and clinical literature with implication for
practice. Journal of Rehabilitation Research and Development. 44, 1-13.
32
10
of using a collaborative approach to ACT in order to achieve the greatest benefit for the
consumer. Being coercive when implementing the strategy has proven to reduce the
overall efficacy in terms of the above mentioned consumer benefits.
Firstly, consumer participation may have significant advantages on a public policy level in
relation to expenditure. When a consumer is able to be part of their own treatment, they
may assist in defining health goals, information gathering and most obviously, problem
detection.35 In relation to budget priorities and expenditure this is clearly a measurable
benefit.
Additionally, there may be a measurable improvement in health outcomes for the
consumer:
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Consumers will value the treatment programs if they understand their health
condition.
Consumers are generally more willing to complete treatment programs that suit
them and such involvement may reduce anxiety.
Participation provides consumers good parameters upon which to self-detect early
warning signs of relapse.
Furthermore, there may also be improvements to the quality of the health care system:

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If consumers participate in the planning, monitoring, evaluating and delivering of the
health care services, they will become more accessible and appropriate to users.
Consumers can be trained to instruct psychiatric nursing students to create a
greater practical insight into the experience of the consumer.
Key findings from the UK Department of Health have found that patient involvement
increases patient satisfaction and also promotes greater trust between patients and
professionals.36
In Australia, the newly established MH-CoPES initiative under the NSW Department of
Health has recognised the fundamental importance of consumer participation to consumer
satisfaction and compliance.37 According to its ‘Stage One’ report, “consumer perceptions
about treatment efficacy and satisfaction with the type of treatment received, as well as the
way it is delivered, determine which treatments are sought or complied with and which
outcomes are valued”.
While it is clear that consumer participation is integral to creating more positive outcomes,
more figures and research are still needed if we are to effectively protect the rights of both
voluntary AND involuntary mental health patients.
a. Specific Advantages of Consumer Participation in Research38
Angelmar, R and Berman, P.C (2007). ‘Patient empowerment and efficient health outcomes’ in Financing
Sustainable Health Healthcare in Europe, 148.
36
Farrell, C (2004). Patient and Public Involvement: The Evidence for Consumer Participation, 2.
37
NSW Department of Health (2006). A statewide approach to measuring and responding to consumer perceptions and
experiences of adult mental health services.
35
38
Promoting Consumer Participation in Mental Health Research: A NATIONAL WORKSHOP.
Depression and Anxiety Consumer Research Unit, Centre for Mental Health Research, ANU.
11
(Consumer participation in this context refers to aiding professional researchers at all
stages throughout the research process, not merely by acting as research subjects.)
Research projects:
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Contribution of consumer expertise
o Being able to contribute valuable ‘lived experience’, consumer participants
may be able to help direct research to where it should be, as opposed to
merely the intended direction assigned by the researcher.
Offer a broader/different perspective
o Consumer participants offer a unique perspective on research issues,
consequently enabling greater knowledge and understanding of mental
health to become possible. Consumer’s perspectives may have an integral
impact upon both the initial development of the hypothesis and direction of
the research, as well as the eventual interpretation of the research findings.
More relevant and valid research
o Incorporating consumer participants in the research process may ensure that
the research is relevant to the actual needs of consumers, not simply their
perceived needs. As a result, enabling consumers to be included in all
aspects of research may guarantee that the findings are appropriate and
applicable to mental health consumers. It will also increase the likelihood that
the suggested treatments provided by the research are both practical and
sustainable.
Facilitate the research/dissemination process
o By utilising consumers during the information collection (eg subject interview)
process, a different set of research methods may be employed. Consumers
may also be able to provide feedback on the best way to conduct interviews,
as well as anticipate how the subjects will perceive the research.
Additionally, allowing consumers to aid in the process of reporting findings
may allow the research conclusions to reach consumers more directly (eg via
online networks or newsletters).
More ethical, consumer-sensitive research
o By enabling consumers to participate in the research process, it is believed
that the research may take on a more sensitive, non-patronising approach.
Consumers may be more aware of how best to manage issues of privacy
and confidentiality than professional researchers. Using consumer
participants may also reduce the risk of exploitative research being
undertaken, with consumers often taking additional precautions in protecting
the research subject from harmful or unethical practices.
Increased researcher accountability
o Involving consumers helps break down the barriers between mental health
consumers and the community at large, thus increasing the transparency of
the project and the accountability of the researcher.
Consumers value & promote research
o The value mental health consumers place upon the research may also be
increased dramatically with the knowledge that consumers themselves have
aided in the research process.
12
The consumer:





Acknowledgement of consumer expertise
o Allowing consumers to participate directly in the research and subsequent
suggestion of treatments ensures that they are empowered and shown
respect for their individual skills. It prevents consumers being treated as
victims of their illness. Rather, it places them in a position of authority and
influence.
Provides a sense of ownership
o Encouraging consumer participation ensures that consumers develop a
greater sense of ownership over the research conclusions that will directly
impact them. This may cause them to feel more in control of their ability to
help themselves and subsequently improve their overall mental health.
Offers consumers a voice
o Consumers may be able to offer information on matters which researchers
are unaware of. For instance, they may have additional insights into issues
regarding treatments, current stigmas, general consumer concerns, etc. In
enabling consumers to voice such insights, there will likely be improvements
in the individual’s general sense of purpose, self worth and efficacy.
Opportunity to contribute to society
o Not only will consumer participation improve the self-esteem of consumers
themselves, but it will also offer them the chance to contribute to society at
large and indirectly help other consumers.
Destigmatisation
o The mere act of allowing consumers to participate as equals in a research
project will help overcome social stigmas and enable consumers to feel both
empowered and more socially connected.
Public health:


Improved mental health services
o Using consumer participants may encourage improvements within mental
health facilities, as well as promote a move towards more consumer-focused
services.
Improved health outcomes
o Consumer participants are also in a rare position to direct the attention of
researchers towards areas that will have a more significant impact on mental
health consumers and upon the achievement of better overall heath
outcomes.
b. Specific Disadvantages of Consumer Participation in Research39
Research projects:
39
Promoting Consumer Participation in Mental Health Research: A NATIONAL WORKSHOP.
Depression and Anxiety Consumer Research Unit, Centre for Mental Health Research, ANU.
13




Illness (lack of objectivity, project delays, lack of competence)
o Lack of objectivity may arise from excessive bias due to differing personal
experiences. In instances where the consumer participant identifies with the
research subject, the subsequent choice of hypothesis, methodological
approach and later interpretation of results may be more subjective than if
only professional researchers were involved.
o Project delays may occur as a result of illness. When such situations occur, it
is necessary that accommodations be made to ensure that the needs of
consumer participants are adequately met.
o Lack of competence may also take place as a result of illness, consequently
prohibiting consumer participants from effectively conducting or later
interpreting the completed research.
Lack of knowledge and training (of both the researcher and consumer)
o In relation to consumer participants, this refers to a lack of knowledge of any
of the multiple components that the research process is comprised of. These
include the subject matter, scientific jargon, ethics, methodology and result
interpretation. Consequently, the project may be compromised due to
inadequate training of the consumer in regards to the above issues, as well
as a lack of training of the researcher in terms of how best to utilise the skills
of consumer participants.
Lack of representativeness
o In order to protect the rights of consumer participants, it is crucial that
individuals and their singular opinions are represented alongside
organisational agendas. While carer and advocacy groups may represent the
wider interests of mental health consumers as a collective, greater individual
representativeness is needed to improve consumer participation.
Increased costs
o In some instances, the provision of support resources for consumer
participants (in relation to training, support infrastructure and payments) may
prove difficult to fund. Thus, professional researchers may have to cut costs
in other areas in order to adequately account for consumer participants.
The consumer:


Health and wellbeing
o As a result of the pressure and workload involved in consumer participation,
stress and anxiety – as well as a subsequent exacerbation of illness – may
prove detrimental to the wellbeing of consumers. In particular, instances in
which researchers are patronising, disrespectful or ‘tokenistic’ in their
approach may serve to emphasise stigmatised attitudes.
Financial/time costs
o Lack of payment is a serious issue for consumer participants who already
have limited funds or are on a Disability pension.
The researcher:
14


Time requirement
o In considering the lack of training and possible liability of consumer
participants, the level of communication, care and support required may be
too substantial to prove valuable to researchers. Integrating the opinions and
interests of consumers may additionally slow down the research process.
Status as sole expert/quality controller
o In sharing their control over the project with consumer participants, some
researchers may feel that they are forfeiting their intellectual ownership of the
project, or that the quality of the research may be compromised.
Conclusion
At the current time it would appear that public expenditure on consumer participation has
focused on voluntary mental health consumers and their satisfaction with treatment rather
than its actual health benefits. 40 There are clearly more significant reasons for promoting
consumer participation – in both their own treatment plan, as well as contributing to the
wider area of research – than simply satisfaction and compliance.
In order to recognise and protect the rights of health consumers to participate we must
push for such reasons to be recognised by the system.
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