Diana rose mhrn 2013


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Diana rose mhrn 2013

  1. 1. Diana RoseService User Research Enterprise (SURE) King‟s College London
  2. 2.  To explore ethical and theoretical underpinnings of user involvement in research in mental health
  3. 3.  Participatory research ◦ Regeneration and health outcomes Health campaigns ◦ HIV/AIDS ◦ “genetic citizenship” UK Department of Health – orthodoxy ◦ Realist evaluation
  4. 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. 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. 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. 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. 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. 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. 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. 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. 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)