Understanding, interpreting and sharing patient reported data: Further in-depth analysis and visualisation of cancer symptom profiles from the eRAPID programme

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.