Post on 25-Dec-2015
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
Stages of User Involvement in Research
Consultation – weak Collaboration
Researcher initiated Jointly initiated User initiated
User controlled
Many funding bodies now use these stages because they want user involvement in research
User-Focused Monitoring (UFM) Co-ordinator and local researchers are all
service users Co-ordinator trains local researchers in
basic research skills Questionnaire development
Questionnaires are different to professional ones Interviewing techniques
Participants say the interviews are more open and relaxed
Quite like your model of ‘User Interview User’
User controlled except the budget
The Service User Research Enterprise (SURE) 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
Did they want to say that irrational (mad) people could not do something as supremely rational as research?
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-led research, researchers have the same experiences as the participants
All are mental health service users
A new development even within participatory research
Continuity of Care - Design Iterative process of conducting focus
groups, analysing and bringing results of analyses back to second focus group then re-analysing
Draft measures Expert panels from focus group members
and independent users and carers to comment on the measures
Draft measures refined Piloting with new users and carers 122 users and carers participated in all
First Focus Group
Tell your story of contact with mental health services
Idea of continuity of care introduced
Most had not heard of this but were able to grasp it once explained to them
Second focus group 1
Results of analysis fed back to participants – checking members’ categories.
Do they want to change, retract, reinforce anything?
Mostly wanted to reinforce.
Second focus group 2 In the interim, had drawn up 12
elements of continuity of care.
Six from the professional literature reworded to make them accessible.
Six from the first discussion (for each group) where continuity had been raised.
Second focus group 3
Participants invited to rank in order of importance the 12 elements of continuity.
First they did this individually and then collectively.
Constructing draft measures
Focus group results then used to create two draft measures of continuity of care – one for users and one for carers
Domains - each had 3 questions and an open-ended space for comments
First round of expert panels Draft measures taken to expert panels
drawn from focus group members.
Users and carers are experts
Asked to comment, add domains, what did they think and is this their normal language.
Second round of expert panels
Second round of expert panels independent of focus groups
Still users and carers Given the same tasks including
asking whether language of instruments was their normal language
Some changes made
Piloting Measures piloted with 67 users and
carers.
Mostly to gauge the feasibility of the questionnaires.
Changed them throughout this process until we were sure they were easy to complete and nothing had been missed.
Some Domains
UsersAccess to servicesInformationHospital dischargeOut of hours servicesPeer supportAvoiding servicesRepeating life history
CarersInformationIssue of confidentialityHospital dischargeRelative receiving care
that they needCarers’ groups
Psychometric Testing Checked for reliability and validity
Results good
User focused measures can have robust psychometric properties
This is now our model for producing user-valued outcome measures
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 (users) cannot engage in the supremely rational activity of science
For example, dispute with Royal College of Psychiatrists over ECT work
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