Who Should Own Our Health Information? 

As healthcare becomes increasingly reliant on technology, questions about who owns health information and how it is accessed become increasingly important. Understanding where data is stored, how it is accessed, and who is responsible for safeguarding it are at the centre of the digital health evolution. According to Dr. Ewan Affleck, “information is the currency of care.” Personal health data is an enabler of patient safety, better health outcomes and reduced harm.  

Citizens will need to have a role in driving healthcare innovation by becoming health/technologically literate and by having full access to their own health data, i.e. a complete Electronic Healthcare Record (EHR).

What would a complete EHR look like? 

  • It would contain all information from all providers at all points of care, including allied health care providers and providers out of the system. 
  • It should go beyond health system data to include all sources of patient health information – data from a patient’s wearables, personal records of health information added by the patient, and unfiltered/direct patient history.  

A complete EHR available to the patient and the care team would be a key driver of continuity of care, patient safety, improved health outcomes and patient experience. 

Currently our system is not able to produce a complete EHR, nor will it be in the near future. In Alberta, citizens have access to some of their health information via My Health Apps which contains two portals – My Personal Record and MyAHS Connect.  My Personal Record contains some health information, with more being added.  MyAHS Connect is being rolled out across the province so only certain areas have access to it at this time. 

You might get the impression that this is a technology problem, but it is not. Health information is service centric, not patient centric. It is not designed to follow the patient throughout their health journey but it should be. This would encourage harmonized policy, technology and workflow from all care providers.

According to the Declaration of Personal Health Data Rights in Canada, “The Supreme Court of Canada has affirmed that individuals own their personal health data, while custodians possess the records (whether hard copy or digital).” 

Many believe there is a moral imperative to give custodianship of data to its owner, the patient. The patient is the only party who has the natural right to data from all providers and thus a unique ability to integrate data if they have guaranteed access to it. 

Our engagement work shows that people want to share their digital health records with others (including across borders) to ensure continuity of their own healthcare and to support analysis (e.g. for research, disease prevention and personalized healthcare).  We also know that patients have different levels of interest in seeing their health data, and different degrees of autonomy that they seek.  

According to the Pan Canadian Health Data Strategy Expert Advisory Group: 

“All persons in Canada deserve to achieve the best health outcomes with appropriate protection for their data. Those who hold health data hold it in trust. Holding something in trust means to protect it and to optimize its value. Canadians expect their health data to be used to improve their own care while protecting their privacy. This same data may be used for better decision making to aid in the health and safety of others, support public health, and improve health systems. These are compatible goals and inseparable components of trust.” 

There is substantial work being done by all stakeholders to maximize the value of health information to both providers and patients.  The current health data ecosystem is impeding the delivery of quality health care and the ability of providers to deliver it. It must be transformed.   

“For patients to be engaged partners who participate in making decisions in their own care as contributing members of their team, they need access to their information.  Information is required to keep the public safe,” says Teri Price of Greg’s Wings. 

Albertans want to be partners in the power of sharing their health information. A collective and informed voice will be needed to demand access and control of healthcare data.  

December 2022