title: 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.
authors: Psychosocial Oncology and Clinical Practice Research Group, University of Leeds, St James's Institute of Oncology, Beckett Street, Leeds, UK. mail: l.j.ashley@leeds.ac.uk
authors: L
authors: L
authors: Ashley
authors: H
authors: H
authors: Jones
authors: J
authors: J
authors: Thomas
authors: D
authors: D
authors: Forman
authors: A
authors: A
authors: Newsham
authors: E
authors: E
authors: Morris
authors: O
authors: O
authors: Johnson
authors: G
authors: G
authors: Velikova
authors: P
authors: P
authors: Wright
mesh_terms: D000368:Aged; D005240:Feasibility Studies; D006801:Humans; D009369:Neoplasms / Q000175:diagnosis / Q000453:epidemiology / Q000523:psychology*; D017063:Outcome Assessment, Health Care / Q000706:statistics & numerical data*; D012042:Registries; D017741:Survivors / Q000523:psychology* / Q000706:statistics & numerical data*; D006113:United Kingdom / Q000453:epidemiology