eRAPID INSIGHTS: Understanding, interpreting and sharing patient reported data

Project start date: September 2021

Expected end date: February 2023

Background: Cancer treatments cause symptoms and side-effects which can lead to hospital visits and worse quality-of-life. Studies show online monitoring of symptoms improves quality-of-life and survival. With increasing numbers of interventions being developed, we need insight on how they work and how to make the best use of patient-reported data.

We previously developed an online monitoring system (eRAPID). During treatment, patients reported symptoms from home and received advice to guide self-management or hospital contact. Reports were available to clinicians in electronic hospital records. eRAPID was well-received and improved symptom control and confidence in managing health.

We collected a large amount of data (4000+ reports on 18,000+ symptoms), which can provide insight on how the intervention worked. Patient representatives highlighted the value in sharing symptom data with patients and clinicians. Therefore, we also want to explore how best to visually present these datasets.

Study aim: We aim to 1) conduct in-depth analysis to understand how eRAPID worked and 2) explore how best to visually present patient-reported symptom data

Study design: Work-package 1 will explore how the intervention worked from patient and staff perspectives. We will use symptom reports, self-management advice and clinical information to understand where and how eRAPID worked. Work-package 2 will develop and evaluate presentation of symptom data, with expert advice, using focus groups, interviews and an online survey to gain perspectives and guide recommendations.

Study outcomes: Results will provide insight on how eRAPID worked and how symptom data can be presented to help improve information needs and decision-making. Findings will inform how eRAPID should be delivered in NHS cancer services. Results will be widely shared to advance design and uptake of online monitoring and use of patient-reported data in cancer care.

Research Team        

Dr Kate Absolom (Principal Investigator)

Professor Galina Velikova

Dr Lorraine Warrington

Miss Eleanor Hudson

Miss Barbara Woroncow

Mr Anthony Betts

Mr Roger Wilson

Mr Andy Kirk