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

Linda Watson; Andrea Delure; Siwei Qi; Claire Link; Lindsi Chmielewski; Éclair Photitai; Louise Smith

doi:10.1186/s41687-021-00373-3

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

J Patient Rep Outcomes. 2021 Oct 12;5(Suppl 2):97. doi: 10.1186/s41687-021-00373-3.

Authors

Linda Watson^{1

2}, Andrea Delure³, Siwei Qi³, Claire Link³, Lindsi Chmielewski³, Éclair Photitai³, Louise Smith³

Affiliations

¹ Cancer Research and Analytics, Cancer Care Alberta, Alberta Health Services, Holy Cross Site, Box ACB, 2210-2nd ST SW, Calgary, AB, T2S 3C3, Canada. Linda.Watson@albertahealthservices.ca.
² Faculty of Nursing, University of Calgary, Calgary, AB, Canada. Linda.Watson@albertahealthservices.ca.
³ Cancer Research and Analytics, Cancer Care Alberta, Alberta Health Services, Holy Cross Site, Box ACB, 2210-2nd ST SW, Calgary, AB, T2S 3C3, Canada.

Abstract

Cancer patients experience numerous distressing symptoms and concerns across the course of their illness, which negatively influence their quality of life. Regardless of cancer type, unmanaged symptoms can lead to adverse downstream consequences. Patient Reported Outcome Measures (PROMs) can be used to inform patient care and lead to targeted symptom management but simply gathering this information does not improve outcomes for the patient. Patient generated information must be easy for the clinicians to access and interpret if it is to be used to inform care delivery in ambulatory oncology facilities. This pragmatic work responded to this need. One Canadian provincial ambulatory oncology jurisdiction implemented digital tracking of PROMs over time in the provincial Electronic Medical Record (EMR) to support full integration of PROMs into standard care workflows and processes. Due to an inability within the EMR for direct patient entry, a hybrid data-entry was designed where the patient completes a paper-based PROM in the waiting room, and after clinical review, a clinician documents this along with their clinical assessment in the EMR. Several digital dashboards were developed which report PROMs data at the micro (individual), meso (clinic) and macro (program) levels. Using PROMs routinely in these provincial practice settings has numerous benefits including enhanced patient-clinician communication, assisting with problem detection, management of symptoms, and improving outcomes for patients. There are over 60,000 unique patients represented in our PROMs database, and over 300,000 unique screening events captured. The PROMs data is now used at all levels of the provincial cancer jurisdiction to provide targeted person centred care (micro), to staff appropriately at a clinic or program level (meso), and for capacity planning for provincial programs (macro). A new provincial EMR is currently being implemented which has an associated patient portal. Based on the success of this work, integration of direct entry of PROMs by the patient prior to the appointment and an associated workflow for symptom management is underway in this jurisdiction.

Keywords: Aggregate; Ambulatory oncology; Cancer; Complexity algorithm; Dashboards; Macro; Meso; Micro; PRO dashboards; PROMs; PROs; Patient Reported Outcome Measures; Person centred care; Personalized care; Routine; Symptom complexity level; Symptom management.