December 13, 2018
Our health data is going digital. But what if it goes viral?
It is now easier than ever for medical professionals and researchers to store, share and analyze our health data. This could help doctors diagnose and treat us better, enable the discovery of new treatments, and make our health care system more efficient and cost-effective. It could give patients more control over their care and ultimately improve quality of life.
But without oversight, we could also end up with a system where chronic treatments are prioritized over cures, drug prices are wildly inflated, patients lose control over their personal information and health inequities increase.
How should communities and policymakers strike an effective balance between encouraging innovation and protecting patients’ rights? Our latest report, Healthy Data: Policy solutions for big data and AI innovation in health, looks at this question.
Here is what we recommend:
- Implement a pan-Canadian, interoperable Electronic Medical Records (EMRs)/Electronic Health Records (EHRs) standard.
- Provide incentives for providers to adopt the standard EMR, and for 3rd party EMR vendors to make existing systems compliant.
- Include integrated consent directives, automated privacy audits, easy-to-use levels of authentication, and built-in de-identification tools in the pan-Canadian EMR/EHR system.
- Design infrastructure for secure transfer of EHRs between providers and central bodies like prescribed entities (non-government entities allowed to collect and store personal health data under Ontario’s Personal Health Information Protection Act).
- Establish clear standards for what de-identification means.
- Create protected status for sensitive information, either through legislation or an interpretation document put out by Privacy Commissioners’ Offices.
- Offer operating grants for community-based digital literacy programs to expand their offerings to reach a wider audience.
- Commission a study to research the effectiveness of ethics education in computer science and engineering programs, and to develop evidence-based curricula.
- Proclaim Part V.1 of Ontario’s Personal Health Information Protection Act (PHIPA).
- Grant oversight powers to the federal Office of the Privacy Commissioner (OPC), and increase the OPC budget to ensure adequate ability to investigate legislative breaches.
- Develop Tri-Council standards for Research Ethics Board composition, training and operating procedures.
- Provide guidance from the provincial Office of the Information and Privacy Commissioner on composing customizable “off-the-shelf” data sharing agreements that adequately protect patients for smaller institutions and individual researchers.
- Enforce new consent and inappropriate data practice guidelines by OPC to stem inappropriate use and collection of health information by private sector firms.
- Expand the data holdings of prescribed persons and prescribed entities, and ensure adequate budgets.
- Encourage AI researchers to access health data through prescribed persons or prescribed entities.
- Offer financial support to set up community-governed data trusts for vulnerable populations, and for research into best practices.
- Strengthen community engagement requirements for prescribed persons and prescribed entities.
The current crossroads is an opportunity to reflect on emerging trends in the shift to digital services. Policymakers need to look forward and proactively set sound policy directions to maximize the benefits of the coming digital expansion of healthcare delivery and research while safeguarding critical privacy rights and safety. Canadians expect no less.