Email updates

Keep up to date with the latest news and content from BMC Medical Informatics and Decision Making and BioMed Central.

Open Access Study protocol

Feasibility test of a UK-scalable electronic system for regular collection of patient-reported outcome measures and linkage with clinical cancer registry data: The electronic Patient-reported Outcomes from Cancer Survivors (ePOCS) system

Laura Ashley1*, Helen Jones1, David Forman2, Alex Newsham3, Julia Brown4, Amy Downing5, Galina Velikova3 and Penny Wright1

Author Affiliations

1 Applied Informatics and Cancer Care research team, Psychosocial Oncology and Clinical Practice Research Group, University of Leeds; based at St James's Institute of Oncology, Beckett Street, Leeds, LS9 7TF, UK

2 International Agency for Research on Cancer, 150 Cours Albert Thomas, 69372 Lyon CEDEX 08, France

3 Psychosocial Oncology and Clinical Practice Research Group, University of Leeds; based at St James's Institute of Oncology, Beckett Street, Leeds, LS9 7TF, UK

4 Clinical Trials Research Unit, University of Leeds, Leeds, LS2 9JT, UK

5 Northern and Yorkshire Cancer Registry and Information Service, St James's Institute of Oncology, Beckett Street, Leeds, LS9 7TF, UK

For all author emails, please log on.

BMC Medical Informatics and Decision Making 2011, 11:66  doi:10.1186/1472-6947-11-66

Published: 26 October 2011

Abstract

Background

Cancer survivors can face significant physical and psychosocial challenges; there is a need to identify and predict which survivors experience what sorts of difficulties. As highlighted in the UK National Cancer Survivorship Initiative, routine post-diagnostic collection of patient reported outcome measures (PROMs) is required; to be most informative, PROMs must be linked and analysed with patients' diagnostic and treatment information. We have designed and built a potentially cost-efficient UK-scalable electronic system for collecting PROMs via the internet, at regular post-diagnostic time-points, for linking these data with patients' clinical data in cancer registries, and for electronically managing the associated patient monitoring and communications; the electronic Patient-reported Outcomes from Cancer Survivors (ePOCS) system. This study aims to test the feasibility of the ePOCS system, by running it for 2 years in two Yorkshire NHS Trusts, and using the Northern and Yorkshire Cancer Registry and Information Service.

Methods/Design

Non-metastatic breast, colorectal and prostate cancer patients (largest survivor groups), within 6 months post-diagnosis, will be recruited from hospitals in the Yorkshire Cancer Network. Participants will be asked to complete PROMS, assessing a range of health-related quality-of-life outcomes, at three time-points up to 15 months post-diagnosis, and subsequently to provide opinion on the ePOCS system via a feedback questionnaire. Feasibility will be examined primarily in terms of patient recruitment and retention rates, the representativeness of participating patients, the quantity and quality of collected PROMs data, patients' feedback, the success and reliability of the underpinning informatics, and the system running costs. If sufficient data are generated during system testing, these will be analysed to assess the health-related quality-of-life outcomes reported by patients, and to explore if and how they relate to disease, treatment and/or individual differences characteristics.

Discussion

There is currently no system in the UK for collecting PROMs online and linking these with patients' clinical data in cancer registries. If feasible, ePOCS has potential to provide an affordable UK-scalable technical platform to facilitate and support longitudinal cohort research, and improve understanding of cancer survivors' experiences. Comprehensive understanding of survivorship difficulties is vital to inform the development and provision of supportive services and interventions.