Alberta Health is undertaking “a focused consultation with stakeholders who support the health and wellness of Albertans…to inform possible amendments to the Health Information Act (HIA) to enable appropriate information sharing and health system refocusing.” The criteria to be used in determining what is “appropriate” information sharing have not been made public.
In the process, discussions will inform and influence assessment of the problems stakeholders face and consider options to address identified issues.
Among the four key areas of concern at issue is the matter that “secondary data use limits and related governance is restricting the ability to complete research, planning, and management necessary to promote the health and well-being of Albertans and data driven innovation.”
Given that the Alberta Health Information Act is not a consent‑based law, at least when it comes to research, it is reassuring to see Alberta Health treading carefully about reusing patient information. For illustration one need only look to Alberta’s COVID-19 Biorepository (announced in June of 2020) that was established to provide researchers with access to biological samples from COVID-positive and COVID-negative patients.
The COVID‑19 Biorepository — a collaborative effort between Alberta Precision Laboratories, major universities, health foundations, and Alberta Health Services — was instrumental in providing researchers with samples taken from patients during the normal course of diagnosis and testing to determine if they had Covid‑19.
Unbeknownst to patients, once medically necessary tests were completed on the collected samples, the remainders were collected, catalogued, and stored in the Biorepository for future research. As Michael Mengel, chair of laboratory medicine and pathology at the University of Alberta and North Sector medical director for Alberta Precision Laboratories said, “This is a very creative way to secure material for future research.”
Indeed.
All of this begs important questions including:
- Who are the “stakeholders” whose views are being elicited about the ‘modernization’ of the HIA? What companies, industry associations and post-secondary institutions are being engaged?
- Whose interests is the process intended to protect: industry or Albertans?
- What will be the basis for changes to legislation and public policy? Law and ethics or competitiveness?
- Will legislative and policy changes demand that Albertans be notified when their biological samples are collected, cataloged, or stored for use in ‘future’ genetic, medical, pharmaceutical, or other research?
- Will legislative and policy changes require that Albertans be given an opportunity to opt out if they do not want to participate in research that utilizes their biological samples or health data?
- Will legislative and policy changes require that Albertans be made aware of the nature and desired outcomes of the research in which their bodily fluids, tissues and data will be used?
- Will legislative and policy changes demand that Albertans be notified when their personal or health-related information is breached — including by those affiliated with the Biorepository or subsequent research activities using samples or data derived from the Biorepository?
As part of the consultation, bureaucrats and elected officials who are interested in earning the public’s trust and goodwill should consider demonstrating accountability and transparency by providing fulsome answers to these important questions — and ensuring the outcome of the consultation protects Albertans’ privacy rights.
