Patient Participation in Research – a patient perspective

Hilary JonesSUCCESS 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 - repsGroup discussion - projects1-2-1 phone callsComments/feedback by emailPresentations to postgrad students

Practical ways in which we contribute to research: What?

Faculty CommitteesResearch and Enterprise Committee – EOIsEthicsCourse Management Committees

Induction Days Service User Co-applicant – bids Advisory Groups, Steering Groups Patient volunteer groups

SUCCESSRESULT

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 2012eg how to approach the family, ‘family care’;feedback incorporated, research title changed

Second stage – full application – Sept 2014two 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 successfuleg help identify key questions, questionnaire design

Example 3: Healthy Living Pharmacies

Join Steering Group – May 2014Comment 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!