This part of the BrolgaNet resource library contains full length documents
or links to specific documents, including training/educational resources,
policy documents and research articles that are relevant to mental health
consumer research. There are many other relevant papers and projects which,
for copyright reasons we are unable to post or which cannot be accessed
freely on the web. Summaries of these works appear in the
Research Directory
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Research Documents
Title
Organisation/Authors
Summary
File
A model of payment to consumers, carers and community representatives
Walker, Christine
Wohlers, Margaret
Information on what some different organisations pay to consumer, carer and community representatives
Executive Summary of Consumer Consultation Process Rural and Regional Victoria
O'Brien, Michael
Mithen, David
A summary of a compilation of consumer consultation reports on the mental health services available in their region.
Greater detail is available in the full reports, also available on the VMIAC website.
Building Consumers In: a resource manual in consumer participation for the non-for-profit sector
Johnson, Sue
McAdam, Helen
Designed as a resource book to help non-for-profit organisations develop policies and practices to facilitate consumer participation in their organisation. It is based on Arthritis Vicotria's experiences.
Consumer Participation in Australian Primary Care: A Literature Review
Butler, Alex
Allwell, Lisa
Brown, Margaret
Balmano, Rachel
Caesar, Claire
Frake, Tricia
et al
This literature review aims to describe exisiting models of consumer and consumer participation in Primary Care. It is not focused on mental health service use or research as such, but is very relevant.
Enhancing Consumer Participation Within Psychiatric Nursing Academia
Happell, Brenda
Roper, Cath
Describes the research proposal, method and outcomes of a project to promote consumer participation in mental health services via the establishment of a position for a consumer of mental health services as an academic staff member of the Centre for Psychiatric Nursing Reserach and Practice. This detailed document offeres many useful insights.
Feedback, Participation and Consumer Diversity: a literature review
Silburn, Kate
Wohlers, Margaret
Lowther, Diane
Spencer, Pam
Markow, Souzi
Johnson, Anne
This literature review aims to provide information and resources to support consumer and health care providers towards better collaboration and service provision. It gives background into commonwealth, state and local initiatives to enhance consumer participation in health. Whist not specific to mental health it does focus on participation of consumers from marginalised groups and addresses some of the specific issues relevant to mental health consumers. It is more service focused than research focused, but nonetheless and excellent background resource with a lot of useful information and ideas.
Systematic review of involving patients in the planning and development of health care
Org: Department of Psychological Medicine, Imperial College School of Medicine, London
Crawford, Mike J
Rutter, Deborah
Manley, Catherine
Weaver, Timothy
Bhui, Kamaldeep
Fulop, Naomi
et al
A qualitative review of papers describing the effects of involving patients in the planning and development of health care. Results support involving patients contribited to changes in provisions of services.
Involving users in the delivery and evaluation of mental health services: systematic review
Org: Academic Unit of Psychiatry and Behavioural Sciences, University of Leeds
Simpson, Emma L
House, Allan O
Systematic review of five randomised controlled trials and seven other comparative studies found users of mental health services can be involved as employees, trainers or researchers without detrimental effect and can have advantages such as greater client satisfaction and less hospitalisation. Involving users with severe mental disorders in the delivery and evaluation of services is feasible.
Collaborative research between users and professionals: peaks and pitfalls
Org: Service User Research Enterprise
Rose, Diana
Provides an overview of collaborative research between clinical academics and services users in mental health with examples of different kinds of collaborative research.
The value of user-led research in psychiatry in imporving the concept of "evidence" in evidence-based psychiatry is examined. Ethical arguments for and problems with evidence based medicine are discussed.
Involving consumers in designing, conducting and interpreting randomised controlled trials: questionnaire survey
Org: Consumers in NHS Reserach Support Unit
Hanley, Bec
Truesdale, Ann
King, Andy
Elbourne, Diana
Chalmers, Iain
A study assessing the extent to which consumers are involved in the work of clinical trial coordinating centres in the UK and the nature of consumers' involvement in randomised trials coordinated by these centres. Consumer involvement in the design and conduct of controlled trials seems to be growing and is welcomed by most researchers. Such involvement is likely to imporve the relevance to consumers of the questions addressed and the results obtained.
What constitutes success? The relative priority of service users' and clinicians' views of mental health services
Org: Rehabilitation and Continuing Care Service, London
Perkins, Rachel
A brief article discussing different perspectives and views of stakeholders about treatment effectiveness and who has the right to define what service users need. Examples discussed are symptom reduction, quality of life, respect, control over own choices, self-esteem etc.
From passive subject to equal partners: Qualitative review of user involvement in research
Trivedi, Premila
Wykes, Til
Describes one team's experience working together for the first time with user-researchers on a study investigating the effects of group medication education session on in-patients in their local psychiatric intensive care unit. They discuss key questions to consider when planning joint research and provide a sample partnership research contract to protect users' interests.
Org: Medical School, Australian National University
Owen, Cathy
Reay, Rebecca E
A partnership between a consumer network and an academic unit in psychological medicine was formed to jointly develop a training package for consumer tutors. Consumer tutors were successfully trained and accredited as tutors and able to sustain delivery of tutorials over a 4 year period. Whilst medical students started with postitive attitudes towards consumers prior to the program, there was a general trend towards improved attitude across all measures. Consumer tutors along with professional tutors are an untapped resource.
Statement on Consumer and community participation in health and medical research
National Health and Medical, Research Council
The Consumers Health Forum of, Australia
This resource is made available on The National Health and Medical Research Council web site. It provides a guide to consumer participation in all types of health and medical research. Includes checklists to facilitate involving consumers in research.
Good Mental Health - Everybody's Business Forum Poster
Australian, Mental Health Consumer Network
ACT, Mental Health Foundation
The, Mental Health Community Coalition
the, Rainbow
., GROW
This forum will be an opportunity for consumers, carers and other interested persons to:
· Find out what the governing parties have to say about mental health and the crisis facing the current system.
· Ask questions and raise issues in regards to the current system and the parties' mental health policy
Building Consumers In: a resource manual in consumer participation for the non-for-profit sector
Johnson, Sue
McAdam, Helen
Designed as a resource book to help non-for-profit organisations develop policies and practices to facilitate consumer participation in their organisation. It is based on Arthritis Vicotria's experiences.
Feedback, Participation and Consumer Diversity: a literature review
Silburn, Kate
Wohlers, Margaret
Lowther, Diane
Spencer, Pam
Markow, Souzi
Johnson, Anne
This literature review aims to provide information and resources to support consumer and health care providers towards better collaboration and service provision. It gives background into commonwealth, state and local initiatives to enhance consumer participation in health. Whist not specific to mental health it does focus on participation of consumers from marginalised groups and addresses some of the specific issues relevant to mental health consumers. It is more service focused than research focused, but nonetheless and excellent background resource with a lot of useful information and ideas.
First published in Health Issues #68, 2001 and made available online by The National Resource Centre for Consumer Participation in Health this article outlines government directives for consumer participation in health and interpretations of whether consumer representatives should be renumerated for their work.
Involving Marginalised and Vulnerable People in Research: A Consultation Document
Steel, Roger
Sainsbury, Kate
Butt, Jabeer
Nettle, Mary
Tallis, Deborah
Hamilton, Russell
Provides and excellent discussion of some of the issues and considerations for researchers when involving people described as marginalised or vulnerable, (which may include people experiencing mental illness) in research.
RANZCP Consumer and Carer Clinical Practice Guidelines
Org: Royal Australian and New Zealand College of Psychiatrists (RANZCP)
The Royal Australian and New Zealand College of Psychiatrists (RANZCP) has developed six Clinical Practice Guidelines to provide mental health practitioners, consumers, and carers with evidence-based information about particular mental illnesses and appropriate treatment options. These have been developed with the support of both the Australian and New Zealand Governments.
The Clinical Practice Guidelines address six specific disorders or conditions that have considerable impact on psychiatric practice in Australia and New Zealand, as expressed from both the psychiatric profession and consumers. These are:
anorexia nervosa;
bipolar disorder;
deliberate self harm (youth and adult);
depression;
panic disorder and agoraphobia; and
schizophrenia.
Org: University of Queensland and the Commonwealth Department of Health and Family Services
Stedman, Terry
Yellowlees, Peter
Mellsop, Graham
Clarke, Robert
Drake, Suzanne
Several ways and scales for assessing consumer outcomes were tested. Results are presented. Authors also conclude and note that measurement of conusmer outcomes is only part of quality management and an evidence-based approach to service development. Other aspects such as consumer satisfaction, services standards, treatment goals and consumer empowerment are equally important. Highlighted is the need for flexibility as service provider, consumer and family perspectives are different and require different methods but each is vital for full evaluation (and individuals within each of those categories may appreciate or need different approaches also).
Creating the infrastructure for mental health research
Org: Health Services Research Department, Institute of Psychiatry, London
Thornicroft, Graham
Bindham, Jonathan
Gournay, Kevin
Idenifys important gaps in research coverage, particluarly with reference to key areas idenified in the UK National Service Framework for Mental Health (1999) and NHS Plan (2000). Researchable questions suggested include more training, a review of meaningful and sustainable ways users can directly participate in research.
Org: New Hampshire-Dartmouth Psychiatric Research Centre
Boyd, Tracy
A short editorial talking about the complimentary nature of evidence based practices and "value-based services" or practices that have limited scientific evidence supporting their efficacy but have high consumer satisfaction ratings.
A play about being a psychiatrist and being a patient...about Borderline Personality and about testing borders.
Gordon Parker:- is an academic psychiatrist at the University of New South Wales, and Executive Director of the Black Dog Institute. In the sixties he wrote for the Mavis Bramston Show and Oz magazine, had a book of fiction published, was a cartoonist for many magazines (including the Bulletin) a broadcaster for the ABC's Science SHow in Sydney and in London, and was a book reviewer for the Sydney Morning Herald and The Australian for a decade.
Neil Cole:- is a lawyer, a member of the Victorian State Parliament for over a decade and, in the 1990s, the Victorian Shadow Attorney-General. He commenced creative writing in the min-nineties and has subsequently had five plays produced in Melbourne and in Sydney (inclucing "Alive at Williamstown Pier", "A Policeman's Absurdity", "Billy Possible", "Dr Cade" and "The Campaign"). Based at the Victorian Mental Health Research Institute, and running the Depression Awareness Research Project, he has been a strong advocate for destigmatizing Psychiatry in recent years.
Building Consumers In: a resource manual in consumer participation for the non-for-profit sector
Johnson, Sue
McAdam, Helen
Designed as a resource book to help non-for-profit organisations develop policies and practices to facilitate consumer participation in their organisation. It is based on Arthritis Vicotria's experiences.
Feedback, Participation and Consumer Diversity: a literature review
Silburn, Kate
Wohlers, Margaret
Lowther, Diane
Spencer, Pam
Markow, Souzi
Johnson, Anne
This literature review aims to provide information and resources to support consumer and health care providers towards better collaboration and service provision. It gives background into commonwealth, state and local initiatives to enhance consumer participation in health. Whist not specific to mental health it does focus on participation of consumers from marginalised groups and addresses some of the specific issues relevant to mental health consumers. It is more service focused than research focused, but nonetheless and excellent background resource with a lot of useful information and ideas.
Information Series: Methods and models of consumer participation
National, Resource Centre for Consumer Participation in Health
Principles and purposes of consumer participation in health services. Provides useful ladder diagram guide to level of control and involvement. Advice on different methods to use to overcome specific hurdles to greater consumer participation
Involving the public in NHS, public health and social care research: Briefing Notes for Researchers
Hanley, Ben
Bradburn, Jane
Barnes, Marian
Evans, Clare
Goodare, Heather
Kelson, Marcia
et al
Recently updated this is an introductory document designed for researchers with no previous experience with involving members of the public as active partners in research. Produced by The UK organisation INVOLVE who's aim is to promote public involvement in research.
Getting Involved in Research - a Guide for Consumers
Royal, Jane
Steel, Roger
Hanley, Bec
Bradburn, Jane
Produced by the UK organisation INVOLVE, one of the leading organisations in the promotion of active consumer participation in research. The authors describe this document as "a guide for people who want to be actively involved in health reserach, not as "subjects" but as consultants, partners and leaders in research commissioning and reserach work."
Involving Marginalised and Vulnerable People in Research: A Consultation Document
Steel, Roger
Sainsbury, Kate
Butt, Jabeer
Nettle, Mary
Tallis, Deborah
Hamilton, Russell
Provides and excellent discussion of some of the issues and considerations for researchers when involving people described as marginalised or vulnerable, (which may include people experiencing mental illness) in research.
RANZCP Consumer and Carer Clinical Practice Guidelines
Org: Royal Australian and New Zealand College of Psychiatrists (RANZCP)
The Royal Australian and New Zealand College of Psychiatrists (RANZCP) has developed six Clinical Practice Guidelines to provide mental health practitioners, consumers, and carers with evidence-based information about particular mental illnesses and appropriate treatment options. These have been developed with the support of both the Australian and New Zealand Governments.
The Clinical Practice Guidelines address six specific disorders or conditions that have considerable impact on psychiatric practice in Australia and New Zealand, as expressed from both the psychiatric profession and consumers. These are:
anorexia nervosa;
bipolar disorder;
deliberate self harm (youth and adult);
depression;
panic disorder and agoraphobia; and
schizophrenia.
Writes about her personal experience being a person with a diagnosis of bipolar affective disorder who also works as a researcher. Describes stigma often associated with being "out".
Collaborative research between users and professionals: peaks and pitfalls
Org: Service User Research Enterprise
Rose, Diana
Provides an overview of collaborative research between clinical academics and services users in mental health with examples of different kinds of collaborative research.
The value of user-led research in psychiatry in imporving the concept of "evidence" in evidence-based psychiatry is examined. Ethical arguments for and problems with evidence based medicine are discussed.
From passive subject to equal partners: Qualitative review of user involvement in research
Trivedi, Premila
Wykes, Til
Describes one team's experience working together for the first time with user-researchers on a study investigating the effects of group medication education session on in-patients in their local psychiatric intensive care unit. They discuss key questions to consider when planning joint research and provide a sample partnership research contract to protect users' interests.
Org: Medical School, Australian National University
Owen, Cathy
Reay, Rebecca E
A partnership between a consumer network and an academic unit in psychological medicine was formed to jointly develop a training package for consumer tutors. Consumer tutors were successfully trained and accredited as tutors and able to sustain delivery of tutorials over a 4 year period. Whilst medical students started with postitive attitudes towards consumers prior to the program, there was a general trend towards improved attitude across all measures. Consumer tutors along with professional tutors are an untapped resource.
User and carer involvement in mental health services: from rhetoric to science
Org: Academic Unit of Psychiatry and Behaviourla Sciences, University of Leeds, UK
Simpson, E.L.
House, A.O.
Describes the trend towards more user and carer involvement in planning, delivering and evaluating mental health services. Evidence for effects of user/carer involvement is growing but limited. Some potential practical solutions to overcome barriers to user and carer involvement in projects are presented.
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