Grand and grounded: Real-world ideas and initiatives in Canada

July 24, 2019

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Recognizing the power of real-world data, Canadian governments, private institutions and academic centres are finding new ways to generate it, collect it, and connect data points across the country. Here’s a taste of what’s happening.

AI-powered national data platform

Earlier this year, the Government of Canada pledged up to $49 million toward the creation of a nationwide AI-based health data platform to accelerate cancer research (and eventually, research in other therapeutic areas).8 A network of close to 100 partners across Canada, including health care institutions, research foundations, and AI research labs in Canada, will collaborate to create the platform. If the grand vision bears out, the platform will enable cancer clinics and hospitals to quickly share data to develop more personalized and effective treatments for aggressive cancers.8

 

Realistic planning for rare-disease treatment

Earlier this year, the Standing Committee on Health made several forward-thinking recommendations: adding transparency to the review process for rare-disease drugs, funding research to generate real-world data on these drugs, and using the data to inform decisions about coverage.10 Along similar lines, the Provincial/Territorial EDRD Working Group’s proposed supplemental process for complex/specialized drugs, outlined in 2018 with stakeholder consultations completed early 2019, involves the collection and assessment of real-world evidence (RWE).10

 

Keeping oncology treatment accountable

Backed by a Canadian Institutes of Health Research (CIHR) grant of almost $1 million, Dr. Kelvin Chan at the Sunnybrook Research Institute in Toronto is heading a multidisciplinary study titled “Developing a framework for the incorporation of real-world evidence into cancer drug funding decisions in Canada.” The study seeks to determine how best to generate and use RWE in the assessment of cancer medications and to refine funding models for these medications.11 The study group will assemble a national panel of clinical, methodological, and policy experts to create flexible RWE-based frameworks for cancer-drug funding decisions.11

 

Connected provinces: Ontario and Quebec

Life has just gotten easier for Ontario physicians and pharmacists. A new web-based portal, developed by eHealth Ontario, gives health providers a comprehensive view of their patients’ health journey within the province.12 Called ConnectingOntario ClinicalViewer, the portal provides secure access to lab results, dispensed medications, diagnostic imaging reports, visits to hospitals, and mental health care information, among other data.12 In Quebec, the Québec Health Record (QHR) allows physicians and other authorized health and social services professionals centralized access to lab results, medical images and medication information, with plans to soon integrate information on hospital stays.13

 

Evidence with teeth

Last October, Health Canada, the Canadian Association for Population Therapeutics (CAPT), the Canadian Agency for Drugs and Technologies in Health (CADTH), and Institute of Health Economics (IHE) jointly developed and delivered a “design sprint” workshop on RWE.14 In addition to exploring opportunities to use RWE across the drug life cycle, the workshop sought to establish standards for “decision-grade” RWE. The group identified a structured decision-making process, end-to-end stakeholder involvement, and trust between stakeholders as crucial factors in the generation of high-quality RWE.14 Building on this theme, the CAPT’s upcoming October 2019 conference will tackle tough issues such as privacy and data sharing, RWE to inform reimbursement, and RWE to drive policy change.15

 

Paying for performance

Spiralling drug-spend, cash-strapped health system, payers stretched to their limits… We’ve all heard these alarm bells. The Real-World Evidence and Outcomes-Based Agreements Working Group is exploring ways to advance the opportunity for outcomes-based agreements (OBA) in Canada, so that a drug’s real-world performance determines when it’s paid for.9 The group’s 2019 priorities include defining the OBA value proposition, identifying scenarios for drugs in which OBAs make the most sense, and examining health outcomes data within patient support programs and at specialty pharmacy.9


References:

8.Pennic J. Canadian Government Awards $49M Grant to Establish Canada-wide AI Health Data Platform. Canada.ai. http://www.canada.ai/posts/canadian-government-awards-49m-grant-to-establish-canada-wide-ai-health-data-platform

9.Real-World Evidence and Outcomes-Based Agreements Working Group for Specialty Pharmaceuticals. Meeting #1 synopsis, March 9, 2019.

10.Lun E. Managing the “Expense” in Expensive Drugs for Rare Diseases (EDRD). Panel discussion, CADTH symposium, April 15, 2019. https://cadth.ca/sites/default/files/symp-2019/presentations/april15-2019/A1-presentation-elun.pdf

11.Value-based decisions from real-world evidence. CanREValue. https://cc-arcc.ca/canrevalue-about/

12.ConnectingOntario ClinicalViewer. eHealth Ontario. https://www.ehealthontario.on.ca/en/for-healthcare-professionals/connectingontario

13.Québec Health Record, Québec. https://www.quebec.ca/en/health/your-health-information/quebec-health-record/available-information/

14.Defining decision-grade real-world evidence and its role in the Canadian context: A design sprint. Summary report of an October 21, 2018 workshop.

15.Driving Health Innovation: Harnessing the Power and Value of Real-World Evidence. CAPT conference Oct. 21-22, 2019. https://www.capt-actp.ca/conference/

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Smart data: Interview with Tazmin Merali