Advisory Council on Ethics and Modernization of Microdata Access - Meeting minutes for February 18, 2020

Date and location

18 February 2020, 8:30 a.m. to 4:30 p.m.
The Ivan P. Fellegi Boardroom, 26^th floor, R.H. Coats Building
100 Tunney's Pasture Driveway, Ottawa

Members

• Anil Arora, Chief Statistician of Canada (Chair)
• Cal Marcoux, Chief Information Security Officer, Canadian Institute for Health Information
• Chantal Bernier, Privacy and Cybersecurity Lead, Dentons Canada LLP
• David Robichaud, Ethics Professor, University of Ottawa
• Len Garis, Researcher and Adjunct Professor
• Mary Dawson, former Conflict of Interest and Ethics Commissioner, Lawyer
• Robert Gordon, Executive Director, Canadian Cyber Threat Exchange

Guests

• Iain McKenna, Breach Response Manager, Office of the Privacy Commissioner of Canada
• George Enei, Senior Assistant Deputy Minister, Innovation, Science and Economic Development Canada

Statistics Canada guests/support

• Jacques Fauteux
• Lynn Barr-Telford
• André Loranger
• Gabrielle Beaudoin
• Eric Rancourt
• Martin St-Yves
• Janique Godin
• Tom Dufour
• Fred Barzyk
• Marc St-Denis
• Cindy Cook
• Aiysha Abdullah

1. Introductions and opening remarks

Anil Arora, Chief Statistician of Canada

Mr. Arora opened the meeting by thanking members for the opportunity to expand the mandate of the council to include an ethics component, and the addition of a second ethics specialist. He noted that the new ethics component is in alignment with Statistics Canada's desire to continue to enhance the trust relationship with Canadians and that this is a key success factor for the agency's modernization agenda. He outlined the importance of the council's feedback on how the agency will achieve its mandate while respecting privacy and safeguarding information. He invited council members to provide their expertise and ethical guidance concerning the transition to the use of administrative data and its ethical constraints, the security and risk framework of organizations accessing data, and the shared responsibility of host organizations and their own data stewardship practises.

2. Statistics Canada and ethics: Progressing on a new landscape

Eric Rancourt, Director General, Modern Statistical Methods and Data Science

Mr. Rancourt explained to council members that the paradigm for data access has shifted. He added that Statistics Canada will integrate the ethical management concept of "gather, guard, grow, give" at each step of data life cycle management. He provided an overview of the Necessity and Proportionality Framework; an approach that has been developed to maximize the production of information and privacy protection when designing a data-gathering approach. The framework provides both a justification and a guide for designing strategies to gather sensitive data using surveys, administrative sources obtained from the public or private sector, or any other method.

The council members supported the Necessity and Proportionality Framework with some recommendations. In regards to the "necessity" portion of the framework, it was agreed that in general, Canadians understand the need and importance of collecting and gathering quality data for targeted evidence-based policy decision making.

Council members noted that new technology is both increasing the ability to collect information and the demand for timely information. In a data-centric society, council members added, Statistics Canada has an even more important role to play in providing trusted insights to Canadians. In this context, members agree that the Agency should outline explicitly "the need" in its business cases while striking the appropriate balance between sensitivity and privacy.

Council members provided valuable input reminding Statistics Canada that ethics goes beyond privacy, and should also consider exclusion, biases, proportionality, and protection, and a measurement to balance these notions should be developed. The council recommended that Statistics Canada aim to further align with international approaches, and that the framework be added to the Agency's communication strategy.

3. Modernization of access to microdata

Gabrielle Beaudoin, Director General, Data Access and Dissemination

Ms. Beaudoin shared an overview of the modernization initiatives and framework related to microdata access, more specifically the DataLab project. She discussed how the Safe People component of the Five Safes Framework was being applied as a guiding principle, and the context in which shared responsibility and accountability could be applied to participating organizations and their researchers. Discussions centred on considerations for the types of organizations who may use the DataLab model, and regarding Safe People, how Statistics Canada can increase ethical awareness of users in the DataLab environment. Council members were very supportive of the risk mitigation factors that Statistics Canada is taking to protect the confidentiality of respondents' data in this new technological environment.

The council members suggested that Statistics Canada continue on its path to provide virtual access to experts using new technologies, such as the capabilities offered through Cloud infrastructure. Members added that Statistics Canada might consider providing access to microdata to international researchers and those from the private sector as long as they meet the accreditation criteria. With respect to private sector entities, it would be key that their research contributes to the public good rather than be motivated by business imperatives.

Council members encouraged the Virtual DataLab project to continue building its information and data security processes, and ensure users are aware that their activities are being monitored. As part of these processes, the Council supported the establishment of sanction to support the access framework. It was suggested that members could serve as part of the appeal process in the event access is revoked from an organization due to a violation or breach of protocols.

4. Access to health microdata files

Lynn Barr-Telford, Assistant Chief Statistician, Social, Health and Labour Statistics Field

Ms. Barr-Telford outlined to council members Statistics Canada's responsibility and commitment to protect data, and the value of this data to Canadians. She discussed the importance of integrating health data to other sources, such as hospital records or income, in order to understand the impact of social determinants on health outcomes. The Council acknowledged the necessity of this work and supported Statistics Canada in its approach to ensuring access to health data for policy-relevant research while protecting the confidentiality of respondents. As Statistics Canada moves forward in developing key data files, such as the health microdata files, the Council advised that ethics should be considered in tandem with the law, and the risk of harm in disclosing de-identified information be considered at each stage.

Council members advised to strengthen the language in data access agreements to convey the responsibility that organizations will have when they partner with Statistics Canada. In the context of Statistics Canada's broader agenda on modernization of access to microdata, the Council advised Statistics Canada to consider the role that virtual data access, through the DataLab project, could play in enabling access to health data.

5. Ensuring success of Council and next steps

Jacques Fauteux, Assistant Chief Statistician, Strategic Engagement Field

Mr. Fauteux discussed the day's proceedings, outlining the initiatives to come from the session, such as:

• Updating the structure of the Necessity and Proportionality Framework;
• Continuing to develop communication material in the Statistics Canada Trust Centre and share progress with Canadians;
• Keep Advisory Council members informed of progress until the next meeting.

As for potential topics for future meetings, it was agreed that the next meeting take place in approximately 6 months; and the proposed main topic will include a case study review of existing data solutions, and the launch of the DataLab.

6. Closing remarks

Anil Arora, Chief Statistician of Canada

Mr. Arora thanked members, and invited them to share their thoughts.

Advisory Council action items

• Update and distribute the revised Necessity and Proportionality Framework to Council
  • Use existing case to review and assess how things are evolving
• Refine the Trust Centre to communicate better with Canadians
  • Provide more documentation
  • Communicate in plain language
• Modernization of Access to Microdata
• Add considerations for public institutions versus private institutions
• Keep council up to date on progress
• Access to Health Microdata Files
• Strengthen agreements with organizations
• Improve on monitoring and enforcement
• Next meeting:
  • In September 2020
  • Update re: health file status
  • Update re: DataLab
• Council members could be asked to provide some quotes or contributions