Research and the Health Information
Act
Rachel Hayward
Office of the Information and Privacy Commissioner of Alberta
Agenda
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Introductions
An overview of the Health Information Act
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Purpose
Roles
Updates to the legislation
Privacy and Research
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Researcher, Research Ethics Board and Custodian obligations
Research Agreements
Recent Investigation Reports
Purpose
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Alberta’s access and privacy law for health information
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Proclaimed 2001, amended 2006 and 2010
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Regulates Albertans’ rights:
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Regulates collection, use and disclosure of health information whenever
a health service is provided
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to access their own health information and
to request corrections
Confidentiality of health information
Reasonable measures to protect health information
Provides independent oversight
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Information and Privacy Commissioner
The Office of the Information and Privacy
Commissioner
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Commissioner – Jill Clayton
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an officer of the Legislative Assembly
independent of government
Has a broad range of responsibilities and
powers, including oversight of:
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Freedom of Information and Protection of Privacy Act
Personal Information Protection Act
HIA
Role of the Commissioner
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Resolve access and privacy disputes
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Mediation
Investigation
Adjudication
Conduct investigations to ensure compliance with
any provision of the Act
Order compliance with the Act
Comment on PIAs
Give advice and recommendations to custodians
Inform the public about the Act and receive their
comments
Recent Changes to HIA
Bill 52
HIAA
Custodians expanded
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Still custodians:
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Minister of Health and Wellness
Alberta Health and Wellness
Alberta Health Services
Health Quality Council of Alberta
Physicians
Pharmacists & Pharmacies
Nursing Homes
Boards and committees established by custodians
Others may be named in regulation
New custodians (as of September 1):
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Optometrists
Opticians
Chiropractors
Midwives
Podiatrists
Denturists
The scope has changed
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Before September 1, HIA applied to the
health services paid for in public health
system
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Now HIA applies to health services,
regardless of who pays
New Regulation
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Alberta Electronic Health Record Regulation
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Sets rules and governance for Netcare
Specifies audit requirements for electronic health
records
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Name of user and application that performs an access
Date and time of access
Actions performed by the user during an access
including creating, viewing, editing and deleting
information
Other changes
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Professional colleges have new roles
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Consultation on putting members’ information into Netcare
Policy development for electronic health records
Health Information Repositories
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Stay tuned – regulations not released yet
Research and the HIA
Research
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HIA defines research as;
academic, applied or scientific research that
necessitates the use of individually identifying health
information
Researcher Roles
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Researcher – Individual looking to use
individually identifying health information for
academic, applied or scientific research
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Custodian – Individual OR Organization that
has custody and control of the data
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Must also be a custodian as defined in the HIA
Privacy and Research
Researcher Obligations
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Submit research proposal to a designated REB
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Consent considerations
Public interest of the research
Qualifications
Document adequate safeguards to protect privacy and
confidentiality
Privacy and Research
Research Ethics Board Obligations
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Review research proposals
Consent Considerations
Develop a response
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Provide to the researcher and OIPC
REBs and the HIA 2
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An REB must;
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Assess whether adequate safeguards will be in
place at the time the research will be carried out
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Assess whether obtaining consent is
unreasonable, impracticable, or not feasible
Privacy and Research
Custodian
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Review request from researcher
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REB approval
Request for disclosure
Decide whether or not to disclose to the
researcher
Sign agreement with the researcher (s. 54)
Research Agreements
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Researchers must enter into an agreement with
the custodian in which the researcher agrees;
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To comply with the HIA and its Regulations
Any conditions imposed by the custodian relating to the
use, protection, return or disposal of health information
Any requirements imposed by the custodian to provide
safeguards against the identification, direct or indirect, of
an individual who is the subject of the health information
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Recent Order H2011-IR-002
Questions …
Rachel Hayward
Portfolio Officer, Health Information Act
OIPC Alberta
# 410, 9925 – 109 Street
Edmonton, AB
T5K 2J8
Phone: (780) 422-6860
Email: rhayward@oipc.ab.ca
Web: www.oipc.ab.ca