Cicely Saunders Institute




Cambridgeshire and Peterborough NHS Foundation Trust




Barts Health NHS Trust




NIHR Moorfields Biomedical Research Centre Patient and Public Engagement and Involvement Team




Bringing quality to life: The patient experience

Abstract:

Background
Oncology and Haematology Clinical Trials (OHCT) is the connection between trial sponsors and patients. Our first priority is to our patients. Why then do we always listen to what the sponsors want from us and not what our patients want from us?

Objectives

  • Introduce research team, clinicians, patients, carers and family to designing and innovating together
  • Work with patients to identify key areas for improving the service
  • Work with patients to design improvement strategies
  • Ongoing patient involvement in the OHCT
  • Give research team and clinicians chance to understand patientsโ€™ perspectives

Method

The staff event
Staff were interviewed about which aspects of their work they valued most and what could be improved. Observations were carried out in clinics. Results from the interviews and observations were presented to the staff, identifying key values alongside key improvement areas.

The patient event
Patients told their stories and identified key moments in their clinical trials journeys. Patients wrote down their dreams of a perfect clinical trials experience and developed a dream wall.

The patient-staff event
Patients and staff matched key improvement areas identified at the staff event with the dream wall developed at the patient event. Subsequently, four dreams were chosen toย  design implementation strategies. Patients and staff were then invited to join focused working groups tasked with implementing those improvement strategies.

Results
Four strategies were designed and four groups were created. Groups will meet on a regular basis, according to timetable developed as part of the strategy.

Discussion
Engaging patients and staff in the development of the service that they both experience and deliver ensures that improvement strategies, grounded in reality and based on already positive values, will be implemented more efficiently and embraced by all those who have helped develop it.




Oxford University’s Nuffield Department of Primary Care Health Sciences




NIHR CLAHRC North Thames




NIHR CLAHRC West Midlands