Integrating cancer survivors' experiences into UK cancer registries: design and development of the ePOCS system (electronic Patient-reported Outcomes from Cancer Survivors)

Abstract

Background:Understanding the psychosocial challenges of cancer survivorship, and identifying which patients experience ongoing difficulties, is a key priority. The ePOCS (electronic patient-reported outcomes from cancer survivors) project aims to develop and evaluate a cost-efficient, UK-scalable electronic system for collecting patient-reported outcome measures (PROMs), at regular post-diagnostic timepoints, and linking these with clinical data in cancer registries.Methods:A multidisciplinary team developed the system using agile methods. Design entailed process mapping the system's constituent parts, data flows and involved human activities, and undertaking usability testing. Informatics specialists built new technical components, including a web-based questionnaire tool and tracking database, and established component-connecting data flows. Development challenges were overcome, including patient usability and data linkage and security.Results:We have developed a system in which PROMs are completed online, using a secure questionnaire administration tool, accessed via a public-facing website, and the responses are linked and stored with clinical registry data. Patient monitoring and communications are semiautomated via a tracker database, and patient correspondence is primarily Email-based. The system is currently honed for clinician-led hospital-based patient recruitment.Conclusions:A feasibility test study is underway. Although there are possible challenges to sustaining and scaling up ePOCS, the system has potential to support UK epidemiological PROMs collection and clinical data linkage.

Integrated care pathways for cancer survivors – a role for patient-reported outcome measures and health informatics

“…In an earlier study called ePOCS, QTool was used to remotely collect PROMs from cancer survivors at 3 different time points and integrate this data into national cancer registries [30]. For eRAPID, we have integrated QTool with the local EPR in Leeds, and patients PROMs data can be transferred in real-time and displayed to clinicians in tabular or graphical form.…”

Improving patient data quality by integrating oncology practice and state cancer registry tumor staging information: Feasibility and future value

“…Note: Includes patients with Stage X, no stage data and unknown stage; Patients were assigned to the first, initial recorded stage in the instance that the patient had multiple stages in either GCS or GCCR; Patients may have had more than 1 primary tumor and were conunted in all multiple primary tumor types but only once in the total; Laterality was not used to determine stage values. The value of integrating multiple types of data to increase the completeness of information and provide cross-validation has been increasingly recognized as evidenced by a number of public and private initiatives, and demonstrated in several studies [4,[13][14][15][16][17]. Recently, the American Society of Clinical Oncology (ASCO) initiated…”

Patient reported outcomes following video assisted thoracoscopic (VATS) resection or stereotactic ablative body radiotherapy (SABR) for treatment of non-small cell lung cancer: protocol for an observational pilot study (LiLAC)

“…Paper administration will be offered to patients without Internet access. QTool is a web-based questionnaire collection system, developed and used as part of the NIHR funded development programme eRAPID (electronic patient self-Reporting of Adverse events: Patient Information and aDvice) (see Figure 2 for an overview) (29)(30)(31). This allows patients to self-report symptoms during and after treatment at home or clinic and has been integrated with patient pathway manager (PPM), Leeds and Yorkshire Cancer Network's electronic patient records (EPRs) system.…”