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User Involvement in Mental Health Research
Diana Rose and Jenny WalkeService User Research Enterprise (SURE)
Institute of PsychiatryKing’s College London
Purpose
To demonstrate how service user-focused research can add something to the methods and findings of conventional research
To show why service user researchers are best-placed to do this
Involving service users at all stages in the research process
Overview A little bit about one of us (DR) Some introductory slides Service user research
User-focussed monitoring Systematic reviews Outcome measures
Criticisms and answers The NIHR continuum
Having a double identity (DR) Service user all my adult life
1972-1986 academic career
1986 medically retired – ‘living in the community’
1996 two identities come together to do user-led research
Camden Mental Health Consortium Resettling Friern Patients
Camden – central and north London Friern – patients to be resettled to this
area Camden Mental Health Consortium –
one of first local user groups Formed to make sure the resettlement
was done well Not user-led at this point – that came
later
Service user research - history 1988 – CMHC and GPMH project on new
inpatient provisions in District General Hospital
1996 – two user-led projects based in NGOs Strategies for Living (Mental Health Foundation) User-Focused Monitoring (Sainsbury Centre for
Mental Health) Political: workers members of the user
movement and took research questions from the movement
To make a contribution – our ‘evidence’ for the movement
User research moves on (or backwards) Early 2000s two groups in universities
SURESearch (Birmingham) Service User Research Enterprise (SURE) Service user researchers have ‘insider
knowledge’
SURE has ‘collaborative’ management structure – one conventional university researcher and one user researcher
SURESearch more complex but ‘head’ is conventional university researcher
Activity
Now test your knowledge - correct answers revealed on final slide.
1. What was the original name of Friern Hospital?
a)Bedlam
b)Colney Priory
c)Colney Hatch Lunatic Asylum
2. How many patients did Friern accommodate by the 1950s?
a)500
b)2000
c)5000
3. What does CMHC stand for?
a)Community Mental Health Clinic
b)Centralised Mental Hospital Care
c)Camden Mental Health Consortium
4. When were two reports from service user-led projects published?
a)2000
b)2002
c)2005
Further Reading
Taylor B: The Last Asylum. London: Penguin; 2014.
Survivors’ History Group, Mental health and survivors' movements and context: http://studymore.org.uk/mpu.htm
Method of Peer-Review of Mental Health Services Started in Central London in 1996
Community services Hospital services
Expanded across UK and across service types
Now also used in Nordic countries Norway “User ask user”
UFM is User-Led Co-ordinator who is a user but also with
research skills
Visits local area to identify service users interested in project
Get together over lunch to make final decision about whether they want to be involved
Some UFM projects questionnaire-based
Group devises questionnaire on the basis of their experience of the service to be assessed
Takes many meetings as co-ordinator synthesises ideas and then brings back to group for amendment
Training
Some involved in UFM projects have never done an interview
Some basic training
But mostly role-play: opportunity to experience answering as well as asking the questions
More qualitative projects
Focus groups have been used
Topic guide devised in the same way as for questionnaires but shorter as want to give group scope to expand on their views
Some training for this too
Collecting the information Interviewers go to many different
venues: CMHTs, hospitals, participants’ homes, charities
Focus groups not usually held in NHS venues – more neutral
De-briefing – co-ordinator speak with interviewer immediately after each interview to check no problems
Analysing the data
For questionnaires there is some statistical analysis
Problematic from involvement perspective as few service users have these skills
Easier for members of UFM team to be involved in analysing qualitative data Can bring their experience to bear
What happens to the report? UFM projects are locally commissioned
e.g. Trusts, local authorities, charities Report goes to commissioners Up to them what they do with it
Some take very seriously and results in measurable changes
Some take not so seriously! Sometimes have feedback days for staff
Activity
5. When did peer review of mental health services start in Central London?
a) 1983
b) 1990
c) 1996
6. Why aren’t focus groups typically held in NHS venues?
a) Lack of space
b) Lack of neutrality
c) Lack of insurance
Further Reading
Rose D, Fleischmann P, Schofield P: Perceptions of User Involvement: a User-Led Study. International Journal of Social Psychiatry 2010, 56(4):389-401.
Example - ECT Consumers’ perspectives on ECT Two main researchers had experienced ECT – “insider
knowledge”
Adapted method of systematic review to make it user-focused Included peer-reviewed literature as normal in systematic
reviews Included the ‘grey’ literature Included qualitative data – ‘testimonies’
Assembled 26 clinical papers and 9 authored by service user groups
Testimonies sourced from a video archive and the internet
Perceived benefit Conventional research showed much higher
levels of satisfaction with ECT than user research – no overlap in the estimates of benefit between the two groups
Critique of method in grey literature
We answered with critique of method in clinical papers
ECT continued BOTH conventional and grey literature showed
high levels of memory loss though conventional did not discuss this or even said it was not important
BOTH showed people did not feel informed but again this absent from discussion in clinical papers
Perceived coercion – testimonies showed some people felt coerced into signing form
Same results but different interpretations – not like the finding on perceived benefit where there were different results
The Dispute
Paper published in a high-profile medical journal
Royal College of Psychiatrists issued press release disputing what we had said about memory loss
Mendacious – they mis-quoted themselves
Policy NICE new guidelines on ECT as our
research work being done Consumer review influenced Especially around information and
consent including about risk of memory loss
User research can have an effect on national policy
Activity
8. Which two of the following are omitted from orthodox systematic reviews?
a)Grey literature
b)Randomised controlled trials (RCTs)
c)Peer-reviewed literature
d)Qualitative testimonies
9. Issues of consent and memory loss are associated which of these treatments?
a)Cognitive Behavioural Therapy (CBT)
b)Occupational therapy
c)Mindfulness
d)Electro-convulsive therapy (ECT)
Further Reading
Rose D, Fleischmann P, Wykes T: Consumers' views of electroconvulsive therapy: A qualitative analysis. Journal of Mental Health 2004, 13(3):285-293.
The claim of neutrality in Randomised Controlled Trials
(RCTs)
RCTs considered the ‘gold standard’ in medicine
Neutrality depends on blinding (not knowing certain details)
But is everything in an RCT neutral?
Outcome measures devised by clinicians and academics
May not be the outcomes that matter to service users
Try to develop measures that are valued by service users (and others) in mental health
Patient Reported Outcome Measures (PROMs)
Much talk of PROMs
But only filled out by patients – no say in which questions are asked
Patient-Generated PROMs (PG-PROMs) Medication side-effects Experiences of inpatient care
Method Participatory research
Attempts to reduce the power relations between researcher and researched
In user-focused research, researchers have the same or similar experiences as the participants
All are mental health service users
A new development even within participatory research
Potential influences on treatment and policy
Procedure Focus Groups which meet twice Recruited because they have experience of what the
measure is attempting to tap Facilitators/researchers have experience of the
treatment or service that is being evaluated On basis of focus group discussions, researchers draw
up draft measure Taken to Expert Panels for amendment and refinement
and that the language is their own language Feasibility study to make sure it is easy to complete –
refinements all the way Psychometric testing About 200 participants involved in all
Example – in-patient care Much anecdotal evidence and evidence
in the ‘grey’ literature that profoundly disliked
My experience too Wanted to do something more rigorous Finally became the main outcome
measure in an RCT evaluating the introduction of psychological therapies on acute wards
Collaborative but our part is user-led
User Measure: VOICE Participants
People who had been in-patients in the local Trust within the previous two years
One group specifically made of participants who had been detained
Focus groups 6-8 people: 4 groups
One facilitator with experience of in-patient care and other also a service user
Meet twice to make sure we have accurately captured their views
Thematic analysis using Nvivo software after both 1st and 2nd wave
Drafting the measure
Done by the researchers on the basis of the qualitative analysis
Quantitative and qualitative questions
Researchers also use own experience
Expert Panels One drawn from focus group members
and one independent
Also been inpatients in previous two years
Tasked with amending and refining the measure and making sure that language and layout are appropriate
Usually quite a few changes made at this stage
Feasibility study
Final stage of constructing measure ~50 people complete the measure
and we find out which parts are easy to complete and which not
Iterative process In this project the participants were
actually in hospital
Psychometrics Mixed methods research
We do this because it is appropriate but also to show that user-led research can be rigorous
One mainstream researcher said users could never produce measures because they would never understand factor analysis
Psychometrics Continued Test-retest reliability: the same people fill in the
measure twice with an interval of a week in between Are the scores the same the 2nd time? This would
mean the measure is stable. VOICE very stable People in this exercise mostly a diagnosis of
psychosis which might compromise stability. Good test-retest reliability because measure
developed by service users?
Psychometrics cont Criterion validity: assess measure against an
existing one Expect some differences because of means
of development: close relationship but there were differences
Acceptability: how does it feel to fill it in Enjoyable? Distressing? Right length?
Activity
10. Who compiles most existing outcome measures?
a) Patients’ families and carers
b) Clinicians and academics
c) Hospital administrators
11. What is ‘blinding’?
a) Conducting research without obtaining consent
b) Assigning participants to different groups
c) Temporarily withholding information to reduce bias
12. What name is given to techniques for finding out whether a measure is stable and valid?
a)Feasibility study
b)Psychometrics
c)Expert panels
d)Quantitative methods
13. What is the main purpose of a feasibility study?
a) To ensure a measure is easy to complete
b) To check cost-effectiveness of a measure
c) To advertise your research
Further Reading
Evans J, Rose D, Flach C, Csipke E, Glossop H, McCrone P, Craig T, Wykes T: VOICE: Developing a new measure of service users' perceptions of inpatient care, using a participatory methodology. Journal of Mental Health 2012, 21(1):57-71.
Frank Scepticism
Peter Tyrer, past editor of the British Journal of Psychiatry, writes:
“The engine of user involvement, while welcome in principle,……….may drive mental health research into the sand.”
Power Most of the projects we have been involved with are
‘collaborative’
Nearly always headed up by professor(s) of psychiatry or psychology
Not just status or naked power although that exists– more subtle
Are you a researcher or are you a patient?
“I wonder what your diagnosis is, then.”
Undermining user-produced knowledge
Hierarchies of Evidence RCT is the ‘gold standard’
But RCTs are not neutral – outcome measures devised by clinicians
‘Expert opinion’ counts as evidence but only as the weakest form
Experts are psychiatrists
Users as experts – a different knowledge perspective
The Cochrane Hierarchy needs revisiting
The charge of bias 1 Said, mostly implicitly, that user-research is
biased, anecdotal and carried out by people who are over-involved – ENMESH conference
We make no pretence of neutrality But all research comes from a certain standpoint Conventional researchers think what they do is
‘obvious’ – nothing is obvious User researchers more explicit about this than
mainstream researchers In my opinion the word ‘bias’ should be banished
from research discourse and all researchers should clearly say where they are coming from.
Bias 2 Although implicit some seem to think
that irrational people (the mad) cannot engage in the supremely rational activity of science
We epitomise ‘unreason’ (Foucault) So more difficult to find legitimacy and
credibility than consumer researchers in other medical disciplines
Paradox – user research in mental health ahead of that in other specialties
A new epistemology for user-led research – learning from feminism
‘Timeless oppositions’: Reason / unreason Culture / nature Intellect / emotion
First are male attributes and valorised So have women been excluded from
science and science not attentive to the concerns of women
Timeless oppositions and madness
The mad positioned as nature, emotion and crucially unreason
The Enlightenment valorised reason and so positioned the mad as its antithesis: Unable to reason Unable to labour
The Great Confinement
Standpoint epistemology and strong objectivity Standpoint epistemology has been seen
as essentialist Sandra Harding and ‘strong objectivity’ We have access to two discourses
Our own That of conventional science
A more complete picture – even a challenging one
Implications
User-led research can add to the jig saw or it can challenge conventional research
But needs to critique the methodologies and epistemologies of conventional research to do this successfully
Other ways service users may become involved in research Everybody in SURE employee of IoP BRC Service User Advisory Group (SUAG) Reference groups for projects e.g. The
Interface Study Sitting on Steering Groups Problem of tokenism although in SURE
also Should be parity of esteem and payment Training resources for service users
INVOLVE (NIHR) Continuum
Consultation Collaboration User-control
Researcher-initiated
Collaboration split Jointly initiated User-initiated
Activity14. The Cochrane Collaboration is associated with which type of evidence?
a)Systematic reviews
b)Focus groups
c)Ethnography
d)Service user research
15. Which two of the following statements are true?
a)RCTs are neutral
b)RCTs are considered the ‘gold standard’ of evidence
c)Service user research is neutral
d)User-led research can reduce the power imbalance in the research process.
16. Sandra Harding used which term to describe research by groups traditionally excluded from knowledge production?
a)Enlightenment
b)Strong objectivity
c)Unreason
d)Evidence-based medicine
17. Which is NOT a level of user engagement on the INVOLVE continuum?
a)Consultation
b)Collaboration
c)Facilitation
d)User-control
Further Reading
Sweeney A, Beresford P, Faulkner A, Nettle M, Rose D (eds.): This is Survivor Research. Ross-on-Wye: PCCS Books; 2009.