The Nature and Purpose of the Service User Research Enterprise (SURE)

1. The Nature and Purpose of the Service User Research Enterprise (SURE) Diana Rose, PhD Senior Lecturer in User-Led Research Co-director SURE HSPRD Institute of Psychiatry

2. History • Began as a ‘virtual’ group • First co-ordinator appointed 2001 • Successful in getting grants and so able to employ staff • Almost all staff have experience of using mental health services – a different knowledge perspective • 2005 – balanced management structure • 10 staff currently • Cutting edge – the only unit like it in any medical speciality in Europe

3. What we do • Integrate Patient and Public Involvement (PPI) into the Institute. • Important as funders now require evidence of this • But not just PPI – we do our own research • Important that we are academics in our own right as well as service users

4. Patient and Public Involvement • The SURE ‘Clinic’ • Advice service to colleagues in the Institute • How they can best involve service users in their research • Sometimes we get more heavily involved ourselves e.g. as co-applicants • The advice service is well used from all Institute Departments and sometimes people from other parts of the ASHC

5. Examples of Our Own Research • Patients’ perspectives on electro-convulsive therapy (ECT): developed a new methodology • User-valued outcome measures • Patients views of taking part in a pharamcogenetic trial of anti-depressant medication

6. ECT • Both researchers had received ECT themselves • Systematic review – clinician authored papers reported much more benefit than user-authored or collaborative papers • Memory loss • Information and consent • Included ‘testimonies’ • Influenced NICE guidelines on ECT • First time user-led research has influenced national policy

7. User-generated outcome measures • Assumption is that randomisation is neutral • BUT the outcome measures are devised by clinicians and reflect their perspective on what counts as a ‘good’ outcome • Service users may not agree either on outcomes or methods

8. Basis of our method • Service users who have experienced the service or treatment being measured • Researchers who also have this experience • ‘Insider knowledge

9. Procedure • Focus groups running twice (respondent validation) • Researchers create draft measure • Taken to expert panels for refinement, additions and deletions • Feasibility study ~50 to see how easy it is to complete • Psychometrics

10. Pharmacogenomics of anti-depressant medicationGENDEP ELSI One of our research questions: What is the correspondence between the aims of scientists and the understandings of participants in trials and other studies using human subjects?

11. Method • Semi-structured interviews • Four countries: • UK, Germany, Denmark, Poland • Quantitative analysis (though small sample) • Qualitative analysis • All interviewers and those who analysed the data had experience of anti-depressant medication

12. What did GENDEP participants know? • 28% understood that the trial was about pharmacogenomics • Understanding what you consented to: • 30% said they had consented in light of risks • 35% said they had consented to have blood drawn for genetic purposes (any genetic purpose) • Not everyone wanted medication as their preferred treatment for depression at all – important for translational research • A disconnect between the aims of scientists and the views of participants • Does this affect the results of trials?

13. Where we are now • SURE has nearly reached its 10th birthday • We often do the user-led component of large studies • We have brought the service user perspective into the mainstream of the Institute • We are visited by groups from all over the world who want to learn about the work that we do and use us as a model