Louise Worswick, PhD Student/Researcher, Bournemouth University lworswick@bournemouth.ac.uk

1. An exploration of the experience of patients who participate in research as co-learners with primary care teams Louise Worswick, PhD Student/Researcher, Bournemouth University lworswick@bournemouth.ac.uk

2. Patient involvement in research • Consumerist approach to public service delivery • Organisational duty to involve • Benefits, impact, barriers to involvement are widely reported • The debate rages about the impact of involvement on research outcomes • Little consensus about who, why and how to involve • Ongoing arguments of tokenism and ‘ticking the box’

3. A gap in this body of research • What is it like for those who get involved? • What is the patient perspective? • What can we learn about their experience of being involved in research? • Could our learning about the experience be relevant to future involvement activities?

4. Using LIMBIC as a case study LIMBIC - Learning to Improve the Management of Back pain In the Community • Interprofessional education • Management of back pain • Using evidence to influence improvement • Principles and methods of quality improvement • Improvement learning • User involvement

5. High level evaluation Quantitative approach Baseline data collection Nine practices from two Primary Care Trusts Patient representatives join the project ☻☻☻ Before and after outcome measures through questionnaires with patients Practice level evaluation Qualitative approach Eight half day workshops with the nine practice teams over 9 months ☻ Practice improvement projects undertaken ☻ Practice level evaluation after workshops ☻ Patient representatives participate in the workshops ☻☻☻☻☻☻☻ Focus group interviews with workshop participants; GP, Practice nurse, receptionist, patient representative☻, Fast Feedback evaluation Patient representatives describe their experiences ☻☻☻☻☻☻☻ High level evaluation Quantitative approach Repeat data collection Nine practices from two Primary Care Trusts Before and after outcome measures through questionnaires with patients

6. Patient involvement in LIMBIC Workshop participants Writing papers Patient stories Conference presentations Workshop evaluation Workshop presentations Celebratory event Mutual support group Commissioning meetings Practice improvement teams LIMBIC film Wiki

7. Findings to date • Shift in understanding of the value of patient involvement “This project has perhaps made me more aware of the value of involving patients in making changes”GP • Patients influenced the choice of Practices’ improvement projects “Made the process more relevant and gave a purposeful perspective”Physio • Attitudinal shift regarding benefit of shared working and interprofessional education “It was very valuable to hear the patient’s experiences and made our team see things from their perspective…their contribution was much appreciated and valued at the workshops” Practice Manager

8. Next steps • Continued engagement with patient research participants • Dissemination processes for LIMBIC project • Identification of relevant LIMBIC project data • Interviews with patient representatives and project team • Analysis of data from interviews and project data • Report findings