Patient Participation in Research – a patient perspective Hilary Jones SUCCESS group volunteer University of Wolverhampton – 19th September 2014 “Sharing Experience to Inspire Excellence”

Aims Demonstrate practical areas in which patients and public can contribute to health research Show how we can help shape outcomes at each stage in the research process Illustrate how powerful it can be when professionals and public work together Give specific examples and case studies

Involving Patients and Public in Research: Why Bother? Faculty ethos Statutory and professional requirements Combined perspectives – holistic academic + health professional + patient Better understanding of patient experience - targeted, clearly focused research aims - integrated design and methodology - rounded, robust and relevant research outcomes - higher quality research - potentially greater relevance or application

Practical ways in which we contribute to research: How? Formal staff meetings - reps Group discussion - projects 1-2-1 phone calls Comments/feedback by email Presentations to postgrad students

Practical ways in which we contribute to research: What? Faculty Committees Research and Enterprise Committee – EOIs Ethics Course Management Committees Induction Days Service User Co-applicant – bids Advisory Groups, Steering Groups Patient volunteer groups SUCCESS RESULT

Co-ordinator: Rupy Pandaal SUCCESS Service Users and Carers Contributing to Educating Students for Services How we contribute to the Faculty of Education Heath and Wellbeing Student selection and admission Teaching and assessments Quality assurance Participation in research activities Co-ordinator: Rupy Pandaal

RESULT Research Enabling Serviceuser and University Learning Together Mission statement: to promote the interests of ordinary people in the involvement of research throughout the West Midlands Chair: Dr Hilary Paniagua

Example 1: Organ Donation Group discussion of Abstract – Nov 2012 eg how to approach the family, ‘family care’; feedback incorporated, research title changed Second stage – full application – Sept 2014 two service users to join Advisory Group (five meetings over three years)

Example 2 : Delayed prescribing of antibiotics Aug 2012 – RESULT group introduced to research idea Dec – Group discussed research proposal with Prof; useful ‘nuggets’ and a named SU/C co-applicant elected Apr 2013 – Co-applicants gave feedback to draft proposal May – Bid submitted to RfPB Jul – Co-applicant reported back to RESULT members Sept – Bid unsuccessful; resubmitted to PRUK and shortlisted Dec – RESULT team encouraged a third submission Ongoing consultation if successful eg help identify key questions, questionnaire design

Example 3: Healthy Living Pharmacies Join Steering Group – May 2014 Comment on project proposals – June 2014 eg Study protocol Study letter of invitation – eg layout, instructions Patient information leaflet – eg tone Consent form Currently with Ethics

What do I contribute? Service User experience and perspective Questions Honesty What do I gain? Confidence New skills, renewed skills Sense of joy, of making a difference

So what do the academics say? Involving the patient and public voice can produce: Research that is more meaningful in practice Learning together that is mutually rewarding Useful insights from a different perspective Challenges to methodology that can sort out problems which might have arisen later Valued members of the wider research team!