Person-centric health data should be front and centre for First Ministers’ Agreements on Healthcare

Canada’s first Ministers have finally reached an agreement, not only on Canadian health transfer payments, but just as importantly, on strategies to remedy major failings in Canada’s health sector.  These include lack of access to primary care, over-crowded emergency rooms, prohibitive wait-times for surgery, and perhaps the worst record in the OECD for COVID deaths in long term care facilities.

There is another less obvious, but arguably more crucial failing: major shortfalls in collecting, sharing, and making effective use of health data to support health care and public health quality. 

Sharing personal health data immediately raises fears about privacy. Yet, when confronted with this question over a year ago, in the context of the pandemic, Canada’s federal privacy commissioner stated, “during a public health crisis, privacy laws still apply, but they are not a barrier to appropriate information sharing.” The inability to share not only data on the genetics of the evolving waves of COVID-19, but also to connect these waves to something as basic as whether an individual had been vaccinated, has imperiled governments’ capacity to control the pandemic.

“Privacy chill” extends well-beyond the pandemic. 

How can we understand physician and nurse shortages without data on their training, where they are working or why they are relocating or quitting their jobs?  How can we understand if novel “innovations” in health services, such as private for-profit joint replacement facilities, are not luring away publicly financed hospital staff? How can physicians provide competent health services without knowing the health histories of their patients?  These essential tasks require robust and appropriate sharing of personal health data.

These are not new observations. First Ministers’ Health Accords both in 2003/2004 and 2017 included commitments by all jurisdictions to improve health data.  These Accords connected health data to “accountability.”  But this was not accountability by provinces and territories to the federal government; rather it was to their publics.

Unfortunately, these First Ministers’ commitments have largely failed.  Among the reasons are a perception that investing in data takes away from “front line health care,” “short termism” posed by electoral cycles, fears that data sharing and the resulting analyses may reveal embarrassing under-performance, and widespread gaps in health data literacy across the health sector and among the public more generally.

Fortunately, there has been a sea change in attitudes regarding health data since the 2003 and 2017 Health Accords – many more organizations and members of the public have seen, especially as a result of the pandemic, just how important high quality health data and actionable analysis are.   

There is finally some cause for optimism, after decades of reports and recommendations.

The most recent is the report of the Expert Advisory Group on a pan-Canadian Health Data Strategy, which was comprised of diverse experts from across Canada and the health sector. The keystone of the report is the recommendation for a Health Data Charter that can serve as a unifying vision around which all health sector stakeholders, including governments, First Nations Inuit and Metis, health care providers and the public, can frame a common approach to health data design and use. 

Crystalized in 10 concise points, the Health Data Charter starts with the premise that health data should be “person-centric,” with the collective obligation to maximize the health and wellbeing of individuals and populations. While sounding simple, truly person-centric health would dramatically alter Canada’s health data by transforming the current architecture from being largely provider-centric, which too often fragments individuals’ health data between family doctors, hospitals, labs, pharmacies, private clinics, nursing homes and so on.

The foundational importance of health data to the quality and sustainability of Canada’s health care sector is clear. Optimizing Canada’s health data will require a strong harmonized approach centred on the welfare of individual Canadians. 

Following the First Ministers meeting, the various bilateral agreements should all include a common pan-Canadian commitment to cooperation across jurisdictions and specific resourcing for advancing health data transformation. The Health Data Charter provides a clear framework upon which to build such cooperation.Michael Wolfson, PhD, is a former Assistant Chief Statistician at Statistics Canada and an adjunct professor in the faculties of medicine and law at the University of Ottawa. Bartha Maria Knoppers, PhD, JD, OC, OQ is Professor, McGill University; Canada Research Chair in Law and Medicine. Ewan Affleck CM, MDCM, CCFP is a practicing physician and health informatician. All three authors were members of the Expert Advisory Group of the pan-Canadian Health Data Strategy convened by the Public Health Agency of Canada.