Patient-Reported Outcomes in Alberta: Rationale, Scope, and Design of a Database Initiative

Abstract

Background The collection of patient reported outcomes (pros) is a standard of care in many cancer organizations. In Alberta, pros have been integrated into routine clinical practice since 2012. This longitudinal collection of pros provides a wealth of data and a unique research opportunity to improve cancer care. The goal of this pro data initiative is to establish a robust repository of information for ongoing clinical care and research focused on pros. In this paper, we describe the rationale, scope, and design of this initiative.Implementation The initiative consists of pros and other administrative health data from the province of Alberta. Retrieval of health data from a variety of provincially governed sources will create a platform of information on pros, health outcomes, cancer data, other health conditions, and demographics. The aims of the initiative are to use the data to inform best practices at the point of care; to conduct health services research, particularly clinical epidemiology studies; and to evaluate a variety of pro-related outcomes.Discussion Because this effort represents our first to integrate routinely collected pros with other administrative health data, a unique and robust data repository will be created. The ability to integrate various types of data will provide a comprehensive mechanism to evaluate a variety of outcomes. Because cancer care in Alberta is governed by a single health care system, the data linkages will include population health and psychosocial cancer data. We anticipate that research related to this initiative will ultimately help to inform more patient-centred care.

Utilizing Patient Reported Outcome Measures (PROMs) in ambulatory oncology in Alberta: Digital reporting at the micro, meso and macro level

“…Cancer patients live with fluctuating symptoms across their cancer care trajectory. Routine collection and interpretation of PROMs data to monitor patients’ symptom complexity and inform targeted symptom management is becoming more common in ambulatory oncology settings [ 6 , 8 ], but without attention to the barriers discussed, their impact in routine clinical care is minimal. This work provides a pragmatic approach to the visualization of PROMs and proposes the ability to improve symptom management capacity within existing cancer care resources.…”

“…Cancer Care Alberta (CCA) is the provincial cancer program in Alberta, Canada, where comprehensive PROMs data is collected alongside clinical and administrative data for most ambulatory cancer patients [ 8 ]. In 2012, CCA began routinely using a standardized PROM called “Putting Patients First” (PPF) to enhance symptom management [ 9 , 10 ].…”

Diagnostic Timelines and Self-reported Symptoms of Patients With Lung and Gastrointestinal Cancers Undergoing Radiation Therapy

“…Patients' self-reported symptoms from the revised Edmonton Symptom Assessment Scale (ESAS-r) [14] were retrieved. The ESAS-r is a patient-reported outcome measure (PROM) routinely collected in the radiation department at initial consultation, and at rst and last treatment review appointments.…”

Patient and caregiver experiences with advanced cancer care: a qualitative study informing the development of an early palliative care pathway

“…Patients were asked about the patient-reported outcome measure they filled at their appointments at the cancer clinic, specifically the 'Putting Patients First' checklist, which allows patients to rate their symptoms and other concerns. 20 Some patients found rating their symptoms allowed for reflection and opened the discussion with their healthcare providers. Most family caregivers helped their loved ones complete the checklist at the appointment.…”