Oral Presentation COSA-IPOS Joint Scientific Meeting 2012

Collecting and linking patient reported outcomes to clinical and cancer registration data:  preliminary results from a feasibility study using the electronic Patient reported Outcomes (ePOCS) system (#87)

Penny Wright 1 , Laura Ashley 1 , Helen Jones 1 , Julia Brown 1 , Alex Newsham 1 , Galina Velikova 1 , Eva Morris 1
  1. University of Leeds, Leeds, Yorks, United Kingdom


Cancer care is becoming progressively complex. The number of people living with and beyond cancer is increasing. Good information underpins planning for individual patient care and for service development at the population level.  Electronic systems may provide a useful way to collect and link patient information, including patient reported outcome measures (PROMs). We have designed and built an innovative electronic system for administering PROMs online, linking these with clinical cancer registry data and semi-automating patient management and communications using a tracking database with a feed from electronic patient records – the electronic Patient-reported Outcomes from Cancer Survivors (ePOCS) system. We are testing the feasibility of ePOCS in an ongoing  prospective cohort study of breast, colorectal and prostate cancer patients.


Patients recruited within six months of diagnosis at two UK NHS hospital trusts consented to complete PROMs at three time points: ≤6 (T1), 9 (T2) and 15 (T3) months post-diagnosis using the ePOCS system.  Feasibility outcomes include: consent and attrition rates, participant representativeness, technical reliability, data quality and patient feedback.


Of 1184 invited patients, 636 joined ePOCS (54%) of whom 517 completed all T1 PROMs (81%, total missing data <1%). T1 reminders were sent to 62% of patients with 70% of these responding. Of 616 patients who have reached T2, 415 have completed all PROMs (67%)  and at T3 the numbers thus far are 207/337 (61%). Data have been successfully linked in the cancer registry. Overall there have been 41 queries regarding problems with logging on to the system (<3% of all  log-ons).  Participant feedback post T3 has been favourable. Older and less affluent patients were more likely to decline participation with lack of internet access/usage commonly cited as the reason.


The ePOCS system has demonstrated proof-of-concept. Patient participation rates and feedback are encouraging.