service user and collaborative research diana rose, phd service user research enterprise (sure)...
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Service User and Collaborative Research
Diana Rose, PhDService User Research Enterprise
(SURE)Institute of PsychiatryKing’s College London
Overview My personal journey
User Focused Monitoring (UFM)
SURE Consumers’ Perspectives on ECT Participatory Research and User-Valued
Outcome Measures
Challenges
My Personal Journey Towards User-Led Research 1
I started my research career in 1976 and also had had a psychiatric diagnosis since 1971
I kept these two identities apart for fear of stigma from my work colleagues
Eventually my mental health problems became apparent at work
Medically retired in 1985
My Personal Journey Towards User-Led Research 2
Then followed 6 years as a ‘community mental patient’ – very distressing
Joined the UK user movement Gradually realised that I could bring my two
identities together and do user-focused research
UFM SURE Obviously had to disclose – a relief Having a diagnosis became an asset
The Service User Research Enterprise (SURE) Nearly all staff are users or ex-users of mental
health services – ‘insider knowledge’ Located at the Institute of Psychiatry, King’s
College London Biggest psychiatric research institute in Europe Generally thought to be very conservative Warned in no uncertain terms when went
there But quite positive about user-focused research SURE is meant to be collaborative
Benefits of Involving Service Users in Research Ask different questions – change the research
agenda
Ground research in the experiences of service users
Use different methods eg participatory research
Develop different instruments – user-valued outcome measures
Shed new light on old questions
Example: Consumers’ Views of ECT
Example of a ‘patient – centred systematic review’
Two main researchers had experienced ECT themselves
Assembled 26 papers authored by clinical academics and 9 reports authored by users.
Testimony data found on the internet and in a video archive
ECT: Themes for both Quantitative and Qualitative Analysis
Perceived Benefit
Permanent Memory Loss
Information, Consent and Perceived Coercion
Emotional Response
Meta-Analysis
Professional papers reported much higher satisfaction with ECT than user reports.
Bias in how user-led work chose its samples?
Able to use own experience to critique the methods used in the clinical papers
Qualitative Analysis
Testimonies – first-hand accounts of receiving ECT
The project had a reference group which suggested initial categories for qualitative analysis
Supplemented by careful reading of the material
Used grids to analyse
Both Quantitative and Qualitative Analyses
The main side-effect of ECT is long-term memory loss
Professionals dispute this About half of people who have received
the treatment say that they did not have sufficient information beforehand
About one third said they did not freely sign the consent form
The Dispute Paper published in a high-profile medical
journal
Royal College of Psychiatrists (RCP) disputed what we had said about their leaflet
Did not mention what they themselves had said about memory loss – that it did not happen
Policy Relevance of the Work National Institute of Clinical
Excellence (NICE) conducting its own review of ECT as we were doing ours.
Received very favourably
Use of ECT now requires much tighter safeguards especially in relation to information and consent
Example 2 – User-Valued Outcome Measures Participatory research
Attempts to reduce the power relations between researcher and researched
In user-focused research, researchers have the same experiences as the participants
All are mental health service users
A new development even within participatory research
Procedure Focus Groups which meet twice Facilitators have experience of the
treatment/service that is being evaluated 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 150 participants involved in all
Example – in-patient care Much anecdotal evidence that
profoundly disliked My experience too Wanted to do something more rigorous Will be evaluated in an RCT Collaborative but out part is user-led Just at the beginning Similar procedure with nurses
A Patient Speaks
“They do have the staff. They do have the staff because you see them all walking around on reception or doing nothing some, and when you ask, they’re not available, which I think is dreadful.”“You queued up to see the doctor or banged on the door to see a nurse or try to catch a nurse. And if you tried to catch a nurse, you can bet your life they were too busy.”
A Nurse Speaks
“A patient is saying I’m eight over 10 suicidal 10 being most suicidal and your saying well you still have to go home I mean …. you say what are we doing here this lady is saying I’m eight over 10 suicidal and your saying well if you cut your wrists go to A&E and we’re putting you on leave.”
Challenges 1 Frank scepticism
Ticking the user box
Colleagues want to use our name to improve their chances of getting grants
At the same time are not taking it seriously
Challenges 2Status and Power All projects we have been involved in
are headed by professors of psychiatry User researchers may not have the
same track record or are young Leads on projects can be patronising to
user researchers Can dismiss user research as biased
and anecdotal To preserve their position of power
Challenges 3The Cochrane Hierarchy of Evidence
In medicine randomised controlled trials (RCTs) are taken as the acme of science
Least good evidence is expert opinion And this means the opinion of
psychiatric experts Need to establish that service users are
also experts Alter the Cochrane hierarchy
Challenges 4 User research criticised for being
biased, anecdotal and carried out by people who are over-involved
Although implicit some seem to think that irrational people (the mad) cannot engage in the supremely rational activity of science
We epitomise ‘unreason’ (Foucault)
Next Steps We are ‘theory light’ Psychiatric research believes itself to be
objective and scientific User research said to be the opposite of
this But can say that all research comes
from a certain ‘standpoint’ including mainstream research
Could adapt some ideas from feminist ‘standpoint’ epistemology
Conclusion User and collaborative research has
increased enormously in the UK during the past decade
But there are many challenges Important to stay grounded in the
experiences of service users and in the user movement – but this is difficult
‘Double identity’ – researchers see you as a user and users see you as a researcher
Develop skills as a translator!