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

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’

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?

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

Baseline data collectionNine practices from two Primary Care Trusts

Repeat data collectionNine practices from two Primary Care Trusts

High level evaluation

High level evaluation

Eight half day workshops with the nine practice teams over 9 months ☻

Practice improvement projects undertaken ☻Practice level evaluation after workshops ☻

Practice level evaluation

Patient representatives join the project ☻☻☻

Patient representatives participate in the workshops☻☻☻☻☻☻☻

Patient representatives describe their experiences☻☻☻☻☻☻☻

Quantitative approach

Qualitative approach

Quantitative approach

Before and after outcome measures through questionnaires with patients

Focus group interviews with workshop participants; GP, Practice nurse, receptionist, patient representative☻, Fast Feedback evaluation

Before and after outcome measures through questionnaires with patients

Patient involvement in LIMBIC

Patient stories

Mutual support group

Workshop evaluation

Writing papers

Celebratory event

Practice improvement teams

Commissioning meetings

LIMBIC filmWiki

Conference presentations

Workshop participants

Workshop presentations

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

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