Title: Understanding, interpreting and sharing patient reported data: Further in-depth analysis and visualisation of cancer symptom profiles from the eRAPID programme
Funder: Department of Health and Social Care

Abstract: Background Increasing the adoption of digital and technology-enabled approaches to improve health care delivery remains a central vision for the NHS. Electronic patient portals and mobile apps are becoming widely available allowing patients to report symptoms and monitor their health. However, there is limited evidence on how these electronic patient reported outcome measures (ePROMs) actually work to improve care or outcomes. In addition, there are increasing calls from patients and professionals for improved strategies around sharing and accessing the large volume of patient reported datasets to support information needs and decisions around care. During the NIHR eRAPID programme grant (RP-PG-0611-20008, 2013-2019) we developed an online ePROMs monitoring system to support cancer patients during treatment. The main eRAPID RCT found the intervention had a positive impact on wellbeing and confidence to manage health for some patients. Here we want to apply mixed-methods to re-examine the data collected through the trials to 1) conduct in-depth analysis to better understand where and how the intervention practically worked and 2) explore how to visually present and share the patient-reported symptom datasets to patients and clinical professionals. The findings will help to refine how ePROMs interventions work in practice and guide how we share patient reported data. Aims and Objectives The main aims are to Understand the mechanisms through which the eRAPID symptom monitoring intervention (including the clinical algorithm for automated advice) may educate and support patients, impact on clinical care and facilitate treatment decisions (work package 1) Determine optimal methods for displaying and sharing patient symptom reports/ePROMs data for patient and clinical users (work package 2) Develop and share recommendations to guide future ePROM intervention development and visualisation choices in research and implementation activities Development work plan The research with be conducted across two work-packages (WP). In WP1a, a secondary exploratory statistical analysis of patients symptom trajectories will be conducted in order to define patients with higher need for urgent care. In WP1b, in-depth exploration of associations between symptom severity, eRAPID intervention use and hospital contacts/clinical management will be assimilated using case studies methodology to determine where the intervention worked effectively and where refinements could be made. In WP2 we will work with patient representatives and a data visualisation expert to develop and refine prototype visualisations for presenting patient reported symptom datasets at individual and group level. A series of focus groups, interviews and an online survey will capture input from patient and clinical participants. Timelines for delivery We have planned project delivery over an 18 month timeline with WP 1 and 2 running in parallel. Anticipated Impact and Dissemination The project findings will be used at a local level to refine the eRAPID intervention (including the clinical scoring algorithms and patient/staff training) to improve implementation plans. More widely, the results will be used to develop recommendations for ePROMs intervention development and evaluation in the NHS. These will be shared with national and international patient reported outcomes researchers, patient groups and clinicians via conference/meeting presentations, guidance documents and academic publications.

Lay abstract: Aims of the research During the NIHR eRAPID programme grant we developed an online monitoring system to support cancer patients during treatment. We found the intervention had a positive impact on wellbeing and confidence to manage health. Here we want to 1) conduct in-depth analysis to understand how the intervention practically worked and 2) explore how to best visually present the patient-reported symptom data to patients and staff Background Cancer treatments cause various symptoms/side-effects leading to hospital visits and worse quality of life. Monitoring symptoms is challenging. Studies have shown online monitoring improves quality of life and survival. With increasing numbers of electronic patient-portals and apps being developed we need more insight on how these actually work and how the large quantities of patient-reported data can be usefully used. During the eRAPID programme we developed and assessed an online system for cancer patients to report symptoms from home, showing the reports in their electronic hospital records. Patients received advice to guide self-management or hospital contact. eRAPID was well received and provided benefits for patients in improved symptom control and confidence in managing health. During the programme we collected a large amount of data (4000+ reports on 18,000+ symptoms), which can be used to provide more insight on how the intervention practically worked. eRAPID patient representatives highlighted the value in sharing the symptom data with patients and clinical teams. Therefore, we also want to explore how these datasets should be visually presented to patients and clinicians as this is not well understood. Design and methods Work-package 1 will explore how the intervention worked from patient and staff perspectives. We will draw together information from the patient symptom reports, self-management advice with clinical information (hospital contacts, admissions, use of symptoms reports) to understand where and how eRAPID worked. In work-package 2 with expert advice we will develop and evaluate the presentation of the symptom data. Focus groups, interviews and an online survey will be conducted to gain different perspectives and guide recommendations. Patient and public involvement The project team includes three patient representatives who bring experience of eRAPID and wider knowledge on the value of collecting and using patient reported datasets. The PPI co-applicants will be supported to play a central role in the delivery of the project and interpreting and sharing results. Dissemination and anticipated outcomes The results will provide better insight on how eRAPID worked and how symptom data can be presented to help improve information needs and decision-making. Findings will be used to inform how the online monitoring system should be delivered in NHS cancer services. Results will be widely shared to advance the design and uptake of online monitoring and use of patient-reported data in cancer care.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: CANCER AND NEOPLASMS