Patient Reported Outcomes and Experiences (PRO & PRE)

–Ongoing Projects–

Integration of a Web-Based Follow-Up Platform into the BC Cancer Agency for Improving Quality of Life Care and Research

Recent improvements in cancer detection have allowed for cancer patients to survive longer than ever before. However, survivors are concurrently reporting treatment-associated morbidities influencing quality of life on a long-term basis. It can often be inconvenient for survivors and health professionals to meet in person for follow up appointments in the years following treatment. 

Therefore, this project aims to evaluate the success of an online follow-up platform in collecting patient reported outcomes for those treated at the BCCA-CSI. With a feasibility survey, patient demographics and preferred method of follow-up along with preferred method of contact will be determined. Follow-up methods include online, mail, phone or in-person. This feasibility study will also allow us to better understand factors that currently discourage use of an online follow-up method. 

Following the feasibility study, the project will move forward to a usability study in which an online platform for creating and conducting patient surveys will be designed and tested on patients. Patients, along with health care professionals, will use the website to complete or create, respectively, a survey and then report on the ease of use of the site and on the process as a whole. This usability study will allow us to assess the user-friendliness of the website to understand the factors required by health professionals and patients for a follow-up survey.

Overall implications of this project will include the necessary framework to develop a follow-up website and the ability for health care professionals to be warned of patient symptoms which require earlier assessment, ultimately improving the efficiency of clinic visits and long-term follow-up for future BCCA-SAHCSI and, potentially, province-wide BCCA patients. 

Prostate Cancer Web Follow Up Pilot

Currently there is a limited understanding of the long term quality-of-life related side effects associated with certain radiation treatments and many other types of medical treatments and procedures in general. It can be a challenge or impractical for patients to continue to be seen by there specialist for years after their treatment. This is especially relevant in areas of the world like British Columbia, as many individuals live in rural or northern communities and have to travel to meet with their specialist. As technologies improve and our society becomes more familiar and comfortable with using computers, there is the increasing potential to use online platforms as a means of communicating and following up with patients. Such technologies could improve care for individual patients and can help to identify treatments and techniques that have fewer side effects.

This pilot project, undertaken by the Early Detection Research Group and oncologists at the CCSI, will help to see if this is an effective way to continue to monitor patients, and is also serving to guide the development of larger agency-wide online quality of life monitoring platform. The Early Detection Group is now working with the Specialized Provincial & Ancillary Services of the Information Management/Information Technology Services at the PHSA to implement this methodology as a clinical tool for all tumor groups at the BCCA for collecting patient reported outcomes, that will be managed by under the direction of David Gavin, Director, Data Integration & Knowledge Transfer, Cancer Surveillance & Outcomes Population Oncology- BCCA.