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