Empowering Consumers to Bridge their Clinical and “Extra-Clinical” Data Worlds

eHEalth Conference

Empowering Consumers to Bridge their Clinical and “Extra-Clinical” Data Worlds

Authors: Dr. Zayna Khayat,  Lydia Lee, Dr. Wael Hassan, Sarah Sharpe, Dr. Shahab Shahnazari, Gary Baksi

Focus of the Panel Discussion:

Patient access to their health data has become a major area of discussion in the ehealth space – as both an enabler to innovation and empowerment, and as a fundamental right. Patients can already readily access “extra clinical” data generated by 3rd party solution providers and practitioners that they choose to work with in the private markets. However, there is an entire other domain of health data that resides in the formal medical system that is not as readily accessible or connected to their extra-clinical data world … today. The ever-increasing digitization and integration of one’s clinical information should in theory facilitate its dissemination back to the patient to empower healthier choices.

While some questions remain as to the feasibility and benefit of opening up patient access to their own health data, there is a growing credence that giving Canadians the ability to control, view, and use their own health data to make decisions about their own health, will have multiple downstream benefits impacting the patient, care providers and health system more broadly.

The purpose of this proposed panel discussion is to envision a future where Canadians are able to seamlessly access their clinical health data and use it in combination with extra-clinical data already generated by a variety of personal third party consumer solutions to support their health and wellness goals.


• Dialogue on the impact such a future state would have on the interconnections and relationships between the patient and clinician/health system.
• Identification of the benefits associated with this type of future state for relevant health system participants.
• Discussion on current barriers that limit the ability to achieve this state on a provincial and national scale.
• Identification of key levers and processes that, if followed, could make the vision a reality.

Panel Perspectives Represented:

The advantages of seamless patient health data access across their two data worlds, on the patient’s terms, have been documented in other jurisdictions to be critical to enhancing one’s ability to better manage and achieve their healthcare outcome goals. The potential exists that these international successes can be replicated in the Canadian context resulting in benefits to patients and providers alike.

Through open dialog between all stakeholders in Canada’s healthcare environment, this panel will discuss the benefits and risks associated with the development of this type of system here in Canada. Panel members have both expertise in this domain and cover the range of system stakeholders who will be impacted by, and involved in the development of such a future state. These include key opinion leaders with “lived experience” representing consumers/patients, healthcare providers, the health system, policymakers, as well as private industry.

Questions For Discussion:

• Given the current landscape, how feasible is the development of this bridging of the two data worlds on a regional, provincial and/or national-scale?
• What are certain functionalities that are essential and must be built into this system?
• What bottlenecks currently limit our ability to realize this state and what are the mechanisms through which we can mitigate them?

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