A Declaration of Health Data Rights, endorsed by ICN and other organizations, has been published for the first time in Canada offering citizens a much needed guideline to their rights regarding health data and their control of it.
One of ICN’s Board members, Alana Kitchen, is part of The Data Working Group, a small group of volunteers from diverse patient organizations and citizen groups, most with lived experience, who worked on drafting the Declaration. As a starting point, they asked, “who owns health data and what does this mean for patients’ access to that data?”
Following a scan of reports and European legislation plus discussions with Canadian health, law and privacy experts, the Declaration of Personal Health Data Rights in Canada was developed.
The drafting process highlighted the confusion that exists around health data and the rights of patients and their families. The result is an aspirational document, aiming to remain relevant into the future as the digital healthcare landscape evolves.
The Declaration of Health Data Rights will continue to take the issue of data rights even further by engaging with all organizations and professionals who manage health records, as well as patient and citizen groups, to build consensus and understanding of the eleven rights that were arrived upon by the working group. Next steps include a plan to share this information nationwide with key stakeholders with the hope that increased trust will lead to better experiences, values and outcomes for patients across Canada.
Helping provide clarity around the complicated aspect of ownership and rights to health is key in ICN’s work and we began similar work in 2019 in partnership with Greg’s Wings. Many key ICN volunteers along with external experts collaborated in creating a Statement of Principles: Personal Health Information. We believe that access to a complete record of care, at all points of care including all patient’s health information, drives patient safety, contributes to better health outcomes and reduces harm. Five key points were established in this Statement.:
- Useful Form – A person is entitled to full access to their Personal Health Information in a useful and portable format.
- Access/Sharing – A person is entitled to give access to their Personal Health Information to anyone, at any point of care.
- Informed Sharing – A person is entitled to be informed of, and in control of, what specific Personal Health Information is shared and with whom.
- Complete Record of Care – A person is entitled to require specified Personal Health Information be included in their records.
- Accuracy – A person is entitled to require correction of inaccurate Personal Health Information, pertaining to the person, that is held by any party.
ICN plans to use the Statement as a prompt to start conversations with Albertans about their rights to access their Personal Health Information and to guide and influence policy and precedents in the province.
For more information on either report please contact Alana Kitchen directly at alana@imaginecitizens.ca
November 2021
