Service User and Collaborative Research

1
Service User and Collaborative Research

• Diana Rose, PhD
• Service User Research Enterprise (SURE)
• Institute of Psychiatry
• Kings College London

2
Overview

• My personal journey
• User Focused Monitoring (UFM)
• SURE
• Consumers Perspectives on ECT
• Participatory Research and User-Valued Outcome
  Measures
• Challenges

3
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

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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

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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, Kings
  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

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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

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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

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ECT Themes for both Quantitative and Qualitative
Analysis

• Perceived Benefit
• Permanent Memory Loss
• Information, Consent and Perceived Coercion
• Emotional Response

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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

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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

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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

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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

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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

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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

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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

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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

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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, theyre 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.

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A Nurse Speaks

• A patient is saying Im 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 Im eight over
  10 suicidal and your saying well if you cut your
  wrists go to AE and were putting you on leave.

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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

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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

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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

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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)

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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

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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!