A Catalyst for Transforming Health Systems and Person-Centred Care: Canadian National Position Statement on Patient-Reported Outcomes

Abstract

Background Patient-reported outcomes (pros) are essential to capture the patient’s perspective and to influence care. Although pros and pro measures are known to have many important benefits, they are not consistently being used and there is there no Canadian pros oversight. The Position Statement presented here is the first step toward supporting the implementation of pros in the Canadian health care setting.
 Methods The Canadian pros National Steering Committee drafted position statements, which were submitted for stakeholder feedback before, during, and after the first National Canadian Patient Reported Outcomes (canpros) scientific conference, 14–15 November 2019 in Calgary, Alberta. In addition to the stakeholder feedback cycle, a patient advocate group submitted a section to capture the patient voice.
 Results The canpros Position Statement is an outcome of the 2019 canpros scientific conference, with an oncology focus. The Position Statement is categorized into 6 sections covering 4 theme areas: Patient and Families, Health Policy, Clinical Implementation, and Research. The patient voice perfectly mirrors the recommendations that the experts reached by consensus and provides an overriding impetus for the use of pros in health care.
 Conclusions Although our vision of pros transforming the health care system to be more patient-centred is still aspirational, the Position Statement presented here takes a first step toward providing recommendations in key areas to align Canadian efforts. The Position Statement is directed toward a health policy audience; future iterations will target other audiences, including researchers, clinicians, and patients. Our intent is that future versions will broaden the focus to include chronic diseases beyond cancer.

Priority recommendations for the implementation of patient-reported outcomes in clinical cancer care: a Delphi study

“…The priorities identified in the present study are consistent with those identified by others, notably, the Canadian position statement [24]; however, the Canadian recommendations were derived from health professionals or academic researchers and were not ranked in terms of prioritisation of which items to consider first.…”

“…Our targeted review search identified one position statement on how to best integrate PROs into clinical practice [24], several scoping/systematic/pooled reviews that discussed implementation of PROs [6,[25][26][27][28][29][30][31], and five methodological and research articles that discussed using implementation approaches to implement and evaluate PRO use in clinical practice [5,9,[32][33][34]. These sources led to the development of 71 suggested statements (Appendix F).…”

The use of patient-reported outcomes in routine cancer care: preliminary insights from a multinational scoping survey of oncology practitioners

“…We recommend that organizations identify a local expert, establish clinical champions,and/or care a working group to set realistic and consensus-driven expectations for the successful implementation of PROs. [ 30 , 31 ] For example, institutions that are still in the early phases of implementation can focus on monitoring and adjusting algorithms to optimize the likelihood of success. To address the issues of limited staff support and resources, they may also consider adopting a staggered or waved rollout using principles of implementation science.…”

Quality of Life in a Real-World Study of Patients with Metastatic Colorectal Cancer Treated with Trifluridine/Tipiracil

“…Evidence demonstrates that capturing qol and symptoms in a real-world context improves symptom control, patient satisfaction 38,39 , and health-related quality of life 40 ; is associated with increased survival duration 36,37,[41][42][43] ; and is becoming more common in real-world clinical settings 44,45 . In recognition of those benefits, a group of Canadian experts and stakeholders, including the Colorectal Cancer Resource and Action Network, developed and published a position statement supporting the greater use of patient-reported outcomes in Canadian health care and research contexts 46 .…”