Project Title : electronic Patient-reported Outcomes from Cancer Survivors (ePOCS): A feasibility study
UKCRN Portfolio Number: 9403
Project Start Date: October 2009 – Anticipated End Date: Recruitment now closed with data being analysed and written up for publication.
Aim/ Objective
To develop a (potentially UK-wide scalable and sustainable) secondary-care based, electronic system for routinely and regularly collecting patient-reported outcomes (PROs) from adults living with and beyond cancer in the years after diagnosis and treatment, and for linking the PRO data to clinical and registry data. Currently, there is no such system in the UK.
Method
ePOCS Stage 1: System Design (Oct 2009 – Sept 2010)
Designing the ePRO data collection system involves:
- Process mapping the system using MS Visio™ 2007
- Securing the support and cooperation of clinical care teams
- Obtaining clinicians’ and patients’ input into system design
- Writing and user testing patient information materials
- Determining the timing of patient consent into the system
- Selecting the battery of PRO measures
- Building a website and questionnaire administration system
ePOCS Stage 2: System Testing (Oct 2010 – Sept 2012)
Testing the resulting system involves:
Running the system:
- For 18 months in 2 local NHS Trusts
- Recruiting a cohort of breast, prostate and colorectal cancer patients who will complete PROs at 3 time-points
Evaluating feasibility outcomes:
- Efficiency and practicality of recruitment standard operating procedures
- Patient recruitment and retention rates
- PRO data completeness, quality and timeliness
The Team
Principal Investigator: Penny Wright
Research Fellow: Laura Ashley
Senior Research Nurse: Helen Jones
Funding: Macmillan Cancer Support