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

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

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

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

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

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

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

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

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

Pharmacogenomics of anti-depressant medication GENDEP 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?

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

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?

Where we are now SURE has nearly reached its 10 th 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