1. Diana Rose
Service User Research Enterprise (SURE)
King‟s College London

2.  To explore ethical and theoretical
underpinnings of user involvement in
research in mental health

3.  Participatory research
◦ Regeneration and health outcomes
 Health campaigns
◦ HIV/AIDS
◦ “genetic citizenship”
 UK Department of Health – orthodoxy
◦ Realist evaluation

4.  DH set up Consumers in NHS Research (now INVOLVE)
 In the same year two user-led projects in mental
health
◦ Mental Health Foundation – Strategies for Living (S4L)
◦ Sainsbury Centre for Mental Health – User Focused
Monitoring (UFM)
 S4L used qualitative methods and focused on service
users own strategies but both projects were user-led
 User-led mostly by people active in the user
movement

5.  Some went freelance and focused on
researching alternative provision often to give
it credibility – sustained roots in user
movement
 Some moved into academia
◦ Individuals in supportive Departments
◦ SURESearch (Birmingham)
◦ SURE
 No longer user-led (cf. Shaping our Lives)

6.  New methodologies (you may not think so!)
 Patient-centred systematic reviews e.g.
Electro-convulsive therapy
 Patient-Generated Patient Reported Outcome
Measures (PG-PROMs) e.g. acute care
 In both cases researchers have received
treatment / service – “double identity”

7.  Good and right as the public should have a
stake in what is being done with their money
and on their behalf
 Citizenship and democratisation of science –
move from „patient‟ to „citizen‟?
 Citizens given access to „secluded spaces‟ of
knowledge generation to contest them.
 Also translation into policy
 Strongest move here is not UK but France
(hybrid forums)
 Begins the transformation of knowledge

8.  Learning from feminist standpoint epistemology
 Timeless oppositions:
◦ culture/nature;
◦ intellect / emotion;
◦ reason /unreason
 First in each pair are masculine attributes
 So are women excluded from science or it has a
masculinist slant
 Transferrable to mental health /madness?
 Positioned as unreason since the Enlightenment
(Foucault)

9.  A more complete knowledge
 Access to mainstream discourses as well as
out own
 ECT – did a mainstream meta-analysis but
included user views collected by users
 PG-PROMs – wholly user-defined measure
construction but mainstream psychometrics

10.  Buzzword in mental health user/survivor circles
right now
 Something essential in our experience?
 Can‟t be as people respond differently
 But not „all individuals‟ – shaped by circumstance
 Return to the user/survivor movement in „70s
and „80s and the political grounding of those
active in PPI in research.
 Who were the activists? Not a random collection
of individuals.
 Those influenced by other struggles (civil rights,
gay and lesbian, anti-colonialist etc) or aware of
marginalisation of some groups

11.  Influence by other struggles meant some were
„prompted‟ to get involved in user/survivor
politics
 PPI in research – many critical of psychiatric
practice and research methods
 Even those broadly happy with psychiatry can feel
the keen injustice of stigma and discrimination
 So not an essential experience – overtly
constructed and sometimes political
 User-led research: we fail those who cannot
commit to a user researcher identity

12.  PPI in health research not currently theorised
 Consists of a collection of studies with little
conceptual or methodological coherence
 Realist evaluation will not deliver
 Ethical argument has stronger history and
foundation
 Does changing the knowledge producers
change the knowledge? Can we claim strong
objectivity?
◦ Challenging (ECT)
◦ Crucial piece of the jigsaw (PG-PROMs)