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!