The pan-Canadian Health Data Strategy: Expert Advisory Group Reports and summaries

Expert Advisory Group Plenary Meeting March 25, 2022

What We Heard #13

Introduction

The 13^th plenary meeting of the Expert Advisory Group (EAG) took place on March 25, 2022. This report presents a summary of the feedback received during the plenary meeting.

EAG Chair, Dr. Vivek Goel, noted that this meeting was the final scheduled meeting for the Expert Working Group. He acknowledged however that the momentum for this work continues, and that members may be called to meet again to discuss finalizing the group’s third and final report.  Dr. Goel recognized the value of the EAG recommendations in informing future health data negotiations and in taking strong, research-based positions on the health data landscape in Canada.

Two final reports were shared with the EAG:

1. North American Observatory on Health Systems and Policies (NAO), Governance of COVID-19 Vaccine Data in Federations
2. Interoperability and Architecture Working Group Discussion Paper, Health Data and Interoperability Standards

Review of the EAG Report #3

This meeting of the EAG focussed on reviewing the third and final EAG report.  Members reviewed outstanding comments on the report and gave feedback on the latest draft. Members discussed in detail the governance needed to oversee the successful implementation of a pan-Canadian Health Data Strategy, including the proposed functions, membership and structure.

Members discussed how the report should be precise in their recommendations and identify actions that can be immediately be taken to implement the proposed recommendations. The report should also be clear that changes in the Canadian health data landscape will take time and will evolve as the federal, provincial and territorial partners work together to achieve a common end goal.

Wrap up and Next Steps

The next draft of the EAG’s third report will be circulated to all members for review and approval.  EAG members may be asked to meet again to finalize the report.

The release of the final report is expected at the end of April 2022.  Members were asked to think about opportunities for press releases, dialogues and engagement once the report is released.

Dr. Goel thanked all members for their incredible effort over the past year and few months and recognized what an engaged group this was.   

Pan-Canadian Health Data Strategy: Expert Advisory Group Plenary Meeting February 18, 2022

What We Heard #12

Introduction

The 12^th plenary meeting of the Expert Advisory Group (EAG) took place on February 18, 2022. This report presents a summary of the feedback received during the plenary meeting.

EAG Chair, Dr. Vivek Goel, shared that the University of Waterloo will be hosting a health data conference in April 2022; an invitation will be sent to all members of the EAG.

The TrustSphere team gave an overview of their work to create a digital, patient-centric platform and talked about the patient engagement that was key to the successful development of the platform. The Interoperability and Architecture Working Group members presented their draft report, and that discussion was followed by Dr. Ewan Affleck who provided an update on the progress of the Data Governance Working Group.

Discussion on the TrustSphere Project

Wyeth Wasserman, Bill Tam and Tibor van Rooij presented an overview of the TrustSphere project, which takes a systems approach to solving the complex problem of the lack of trust in digital health care. They presented a model of collaborative research and development where the patient is at the centre of their own circle of care allowing them to view, share and manage their own health care data, in a trusted single access platform.

As a test use case, the TrustSphere team worked with the pediatric type 1 diabetes patient population at BC Children's Hospital. In this population, the TrustSphere team showed how data in the single access platform could include information such as: patient care plans and insulin doses; provincial data such as lab test results and Pharmanet data; and data from diabetes management devices such as insulin pumps, glucose sensors and other wearables (through partnership with medical technology companies).

The TrustSphere team stressed how patient and family engagement was key to the development of their model, and that if digital health solutions are to be successful, patients/families have to be involved throughout the entire process. Trust also relates to how data is accessed with appropriate consent and permissions for research purposes. Privacy and ethics decision makers were also involved in all parts of the development process.

The EAG was interested in the scalability of this model, in particular expanding to other jurisdictions and to other conditions. The TrustSphere team emphasized that is it not just a technology challenge to scale this model, but rather a governance challenge as well. The TrustSphere team shared that in order for this model to be successful, three things are essential: patient engagement/empowerment, a standards based approach when sharing data, and a solid governance structure to guide accountability and data stewardship in the model.

Presentation of the Interoperability and Architecture Working Group Report

Interoperability and Architecture (I&A) Working Group members, Dr. Stafford Dean and Dr. Amol Verma, shared the working group's draft report for discussion. The working group has proposed their approach to health data sharing that builds on, and strengthens, existing data repositories and seeks to standardize them toward a person-centric national health data model. The presenters gave an overview of the recommendations in their report, as well as the principles for implementing those recommendations. A proposed Interoperable Health Data Platform would empower health data stewards and give Canadians a voice on how their data is being used. This platform could build off of portals that are already being developed in provinces and territories (PTs). A key element of the model needed for success is meeting PTs where they are in terms of capacity and readiness to implement recommendations. Notably this model does NOT require a single physical platform, rather through modern techniques existing and new data sets can be connected through interoperable connections.

The EAG and I&A Working Group members discussed at length the implications of setting pan-Canadian standards in order to facilitate data sharing across the country, including how that would look across different settings (research, clinical care delivery, public health, technology vendors), the means of mandating and/or enforcing these standards and the costs and other factors needed for jurisdictions to have interoperable systems.

Progress Update on the Governance Working Group

Dr. Ewan Affleck presented an update on the work of the EAG's Data Governance Working Group, and noted that a pan-Canadian governance model would have to be adapted to align with the current state in each jurisdiction. He presented an overview of essential governance elements, including alignment with the proposed Canadian Health Data Charter, health information technology interoperability, health data oversight bodies, and health data literacy among the workforce and providers. He expanded on the oversight role, describing a Health Information Coordination Council as a body to oversee the implementation of the pan-Canadian Health Data Strategy and the development of standards, policies, and frameworks. The Governance working group acknowledged that a health data governance structure would need to respect First Nation, Inuit and Métis data sovereignty. Discussions wrapped up with EAG members noting that coordination across FPT governments is essential for this work to succeed, and that public participation in the oversight is needed to ensure transparency and to incorporate public perspectives and insights.

Wrap up and Next Steps

A draft of the EAG's third report will be circulated to all members in the coming weeks for review. The final meeting will be on March 25th.

Pan-Canadian Health Data Strategy: Expert Advisory Group Plenary Meeting January 14, 2022

What We Heard #11

Introduction

The 11^th plenary meeting of the Expert Advisory Group (EAG) took place on January 14, 2022. This report presents a summary of the discussion during the plenary meeting.

During this plenary session, the Interoperability and Architecture (I&A) Working Group and the Governance Working Group both provided updates on their work, and EAG members had the opportunity to discuss the ideas presented and offer input on how to progress the work.

Additionally, the Chief Data Officer of the Public Health Agency of Canada (PHAC), Chris Allison, debriefed the group on the current news story on the Agency's purchase of location data from Telus.

Progress Update and Advancement of the Interoperability and Architecture (I&A) Working Group (WG)

Dr. Stafford Dean, co-chair of the I&A WG, along with Dr. Jason Scarlett, WG member, provided an update to the EAG on the direction of the WG's group. Dr. Dean indicated that the WG's approach was shaped by four key tenets: a focus on clinical data in real-time; the need to meet provinces at their current capacity level; the critical need for standards on interoperability, coding, reporting, etc.; and a federated data system that allows for data access on demand, but leaves the data where it is.

Dr. Dean spoke about the challenges of building a pan-Canadian interoperable health data system, and the importance of buy-in from various stakeholders. He touched on the current state, i.e., existing health data clinical information systems and common data sets that could be leveraged, and described the vast eco-system of standards that would have to be integrated into an interoperable system.

Dr. Scarlett then presented a schematic diagram of the WG's proposed system architecture which recognizes the wide variety of approaches to warehousing data, and creates a standardized layer (national data platform) that supports interoperability and allows for data sharing between jurisdictions.

EAG members asked that the presented architecture's focus on clinical systems and the health provider as the primary customer be augmented to bring personal and analytic systems and the pan-Canadian Health Data Strategy's focus on person-centricity. Key conclusions from the presentation included the need to "standardize [data] at the source" for integration into a virtualized federated data platform and that future governance discussions would need to further define data use and access priorities.

Progress Update and Advancement of the Data Governance Working Group

Dr. Ewan Affleck presented an update on the ongoing work of the Governance Working Group, and the EAG members spent the majority of the time fine-tuning the Health Data Charter, which provides ten clear principles for the implementation of the strategy. Dr. Affleck also shared an optimized governance model, divided into different health data governance elements, most of which were linked to at least one Charter principle. The WG members have divided the elements among themselves and are each working on addressing key questions, such as data use harmonization, suggested approaches to legislation, and crafting a functioning framework for the role of Data Stewardship in the model.

EAG members held a brief discussion on clarifying language used, and acknowledged that governance would be the most important piece of the pan-Canadian Health Data Strategy. It would need to be built around the health system's obligation to patients and patient outcomes.

The next steps for the WG are to validate the optimized governance model, adapt it to the current state, and craft recommendations and a roadmap for implementation.

Debrief on the Public Health Agency of Canada (PHAC) and Telus Mobile Data News Story

Mr. Christopher Allison, Chief Data Officer of the Public Health Agency of Canada, was invited to the meeting to provide the EAG members with context and an update on the news story that PHAC had purchased user location data from a cell service provider.

Chris shared that the Agency had contracted the Telus Data for Good program to access already collected, aggregated, de-identified operator mobility data (cell-phone tower data). The de-identified data was used to evaluate effectiveness of public lockdown measures and identify possible links between movement of populations and the spread of COVID-19 within Canada. The contract prevents PHAC from accessing any personal information data, and excludes any data or data sets that could be re-identified. The Agency is working with the Privacy Commissioner and others to demonstrate that there has been no violation of privacy laws.

EAG members acknowledged that the situation had become highly politicised, and pointed out that it also raised questions around public health literacy, knowledge of data collection opt-out options, and the role of government, if any, in ensuring an ethically responsible data economy. Members also discussed how the Data Steward role in the presented data governance model could have mitigated the negative perception of pro-active use of data to benefit Canadians.

Next steps

The EAG will continue to develop its third report, which will elaborate on the second report's recommendations to strengthen the Health Data Foundation. The Governance and Interoperability working groups will continue in support of the development of the third report.

Pan-Canadian Health Data Strategy: Expert Advisory Group Plenary Meeting December 15, 2021

What We Heard

Introduction

The 10^th plenary meeting of the Expert Advisory Group (EAG) took place on December 15, 2021. This report presents a summary of the feedback received during the plenary meeting.

EAG Chair, Dr. Vivek Goel, congratulated members on a year of working together and the progress that has been made. Dr. Goel highlighted Chief Public Health Officer Dr. Tam's newly released report and its references to the importance of strengthening health data linkages.

Dr. Harpreet Kochhar, President of the Public Health Agency of Canada, commended the EAG members for their work to develop clear and informed reports. He thanked members for sharing their knowledge and advice and he stated that he looks forward to reading their final report.

Dr. Sara Allin and Julie Farmer, North American Observatory, University of Toronto summarized their preliminary finding from their Governance of COVID-10 Vaccine Data in Federations report. Alexander Robert Bernier and Dr. Bartha Knoppers, Centre of Genomics and Policy, provided a synopsis and examined consequential changes steaming from draft Bill 19 (Quebec) – An Act respecting health and social services information and amending various legislative provisions. The chair of the EAG's Governance Working Group, Dr. Ewan Affleck, summarized the Working Group's analysis of the current state of governance in Canada, and proposed concept of a "Canadian Health Data Charter".

Finally, the EAG received a summary of lessons learned and next steps based on recent pan-Canadian Health Data Strategy (pCHDS) targeted stakeholder engagement sessions, including Indigenous engagement.

International Governance Models of COVID-19 Vaccine Data

Dr. Sara Allin and Julie Farmer, North American Observatory of Health Systems and Policies (NAO), presented an overview and summary from their Rapid Review: Governance of COVID-19 vaccine data in federations report. The objective of review was to draw lessons for Canada from other federation and quasi-federations on the governance of COVID-19 vaccines data. As few countries have implemented fulsome health data governance structures, the NAO chose to focus on governance of vaccine data during COVID-19 due to its immediate relevance and the ability to extrapolate from a highly visible domain to an overall model.

Four jurisdictions – Germany, Switzerland, Australia and the U.K. – were used as a comparative case study because they are high-income federated or quasi-federated states, similar to Canada. The analytic overview focused on how each country addressed the following components: (i) COVID-19 vaccine data coordinating bodies, (ii) nature of immunization data reporting/sharing systems, (iii) mention of data sharing in vaccine strategy, (iv) legislation on vaccine data sharing/reporting, (v) documented description of data flow from subnational to national level, and (vi) identified incentives to subnational-national data sharing. The centralized/decentralized nature of data sharing as well as challenges and opportunities for each country were presented.

The key lessons from the review that could be applied to overall data governance were:

1. Legislation helps set out expectations on the roles governments and expectations concerning data sharing among governments.
2. Variation in management and reporting systems impede effective surveillance as well as the evidence needed for rapid and effective policy interventions.
3. Legislation and policies mention minimum data sets and data variable descriptions at the national level for use within subnational jurisdictions.
4. Data reporting and sharing processes can be impacted by practice changes. Governance mechanisms should build in capacity for change or adaptation to data sharing processes.

It was noted that there is no standard method of governance used in other countries. However, in jurisdictions where data sharing legislation was already in place, it generally created an enabling environment and improved timely data sharing amongst organizations and local governments.

Members asked Dr. Allin and Ms. Farmer to consider the following questions and follow up if possible:

1. Whether there are jurisdictions that have successful legislation for data sharing.
2. If yes:
   • whether that legislation works on a domain-by-domain basis (e.g. cancer).
   • whether there are specific conditions, levers or events that helped drive success stories for jurisdictions with legislation in place.

Quebec's Bill 19

Alexander Bernier and Prof. Bartha Knoppers of McGill University presented their analysis of Quebec's recently introduced Bill 19 – An Act Respecting Health and Social Services Information and Amending Various Legislative Provision. Mr. Bernier explained that the Bill would significantly change the existing regime for health information access and sharing . They suggested the Bill in its current form proposes several major positive changes to Quebec statute, including:

• Health institutions can share data with other institutions for purposes that are consistent with existing reasons for its use. In current legislation, information was only to be used for the specific purposes for which it was collected.
• For researchers attached to a research institution, data access requests will pass through their own institution to gain access to another institution's data. In current legislation, researchers submit requests to the custodian that holds the data.
• For unaffiliated researchers, other health bodies, and extra-provincial bodies requiring access to data, for research, quality improvement and/or planning, the access request will pass through a new central body created by the legislation.
• Close-to-broad consent is allowed for research. Researchers can now request participant consent for use of data by categories of research or types of researchers. Under current legislation, there is debate as to whether broad consent is permissible.

They also noted that the current draft of the Bill introduces several changes that could be considered neutral or negative. For example, for a Quebec-based institution to share data outside of the province, they must be able to understand and guarantee a level of privacy protection in the law and policy of the recipient institution equivalent to that of Quebec's. A large number of procedural requirements around data disclosures are also included.

Progress Update and Advancement of the Data Governance Working Group

Dr. Ewan Affleck presented the preliminary work of the EAG's Governance Working Group, which was created to articulate the contents of the "Clear Health Data Governance and Accountability" pillar of the Health Data Foundation. Dr. Affleck outlined the complex environment of current state of health data governance in Canada, including highlighting gaps, such as the lack of nation-wide standards, the emphasis on custodianship, and absence of interoperability enforcement. The group's realization that there are no agreed upon principles for how health data should be designed and used to optimize the health of individuals, communities, and Canadian society lead the group to the idea of drafting a "Canadian Health Data Charter".

The working group will focus on design principles that would be contained in their draft Charter, as well as recommendations on how to implement a new health data governance model that reflects the Charter's content. The working group will concentrate on developing of a succinct charter with a well-defined scope, using model legislation as a template.

Discussion from members included general agreement to develop the charter and the importance of finding common ground. Members suggested to co-develop with provinces and territories as much as possible and to include robust language around accountability and enforceability. Members also highlighted the impact of using language that takes into account Indigenous rights, aligns with Indigenous data principles currently in development and recommended to co-build where possible.

Stakeholder Engagement Update

A summary of the approach used during Phase I (June-November 2021) of pCHDS engagements, including summary of Indigenous engagement activities, was provided. Using the EAG's first report as a foundation, 18 two-hour facilitated meetings with targeted stakeholders (451 participants) explored the systemic barriers that have been preventing the effective collection, sharing, and use of health data in Canada. Participants shared feedback on EAG's proposed vision, principles, and barriers as well as how to find solutions going forward. There was overall agreement that the EAG is on the right track but that more focus on the health care workforce is needed. The need to further engage the public was also highlighted, most notably to seek further clarity on patient data ownership, right to access and privacy; to promote data literacy; and to include the public as an equal partner in informing solutions. A synthesis report of engagement and outcomes will be appended to final EAG report.

Discussion highlights included an emphasis on the importance of embracing 'essential caregivers' as part of health workforce language, the need to activate the public to drive strategy forward, and the importance to co-develop with P/T's and Indigenous groups. Members also suggested that quotes from patients, health providers, researchers and industry members be used in the EAG's next report to emphasize the systemic obstacles that need to be overcome.

Next steps

The EAG will develop its third report, which will elaborate on the recommendations presented in the second report to build the Health Data Foundation. The Governance and Interoperability working groups will continue in support of the development of the third report.

pan-Canadian Health Data Strategy: Expert Advisory Group Plenary meeting: November 19, 2021

What We Heard

Introduction

The ninth plenary meeting of the Expert Advisory Group (EAG) took place on November 19, 2021. This report presents a summary of the feedback received during the plenary meeting.

Jocelyne Voisin and Brett Taylor presented an update on the development of Health Canada's Digital Health Strategy. Brent Diverty from the Canadian Institute for Health Information (CIHI) and Abhi Kalra from Infoway jointly presented an overview on Standards in Canada (including data standards, privacy and security standards, data exchange standards, and information standards). Finally, Jeff Nesbitt and Matthew Aubie from the Canadian Health Information Management Association (CHIMA) shared some highlights from their years long public consultations on health information in a presentation titled "People, Information and a Certified Profession."

Digital Health Strategy Presentation

Jocelyne Voisin and Brett Taylor provided update on the development of Health Canada's Digital Health Strategy, with a focus on interoperability related to technical exchange standards. EAG members were invited to give feedback on the direction of the strategy.

Standards in Canada Presentation

CIHI and Infoway began their presentation with an overview of standards definitions (content, terminology and exchange standards) and described the roles their organizations have in the "standards ecosystem" in Canada and internationally.

The presentation highlighted the foundational interconnectivity requirements (e.g., TCP/IP), structural data exchange formats (e.g., HL7 FIHR), standardized content (e.g. SNOMED), and organizational systems (e.g. governance, privacy policy). CIHI and Infoway shared their challenges to improving the health data ecosystem and provided recommendations for moving forward in five areas – aligned with the health data foundation: Governance, Trust, Policy, Interoperability, Literacy / Capacity.

Following the presentation EAG members reiterated that issues related to interoperability are largely not technical and that there is an essential need for policy and governance to come first for meaningful progress to be made.

Members also noted that the work to date seemed biomedical focussed and reminded CIHI and Infoway to take into consideration the determinants of health and broader health sector needs such as health workforce data. Members also iterated that interoperability standards must be compatible with exporting large samples / sets of aggregated patient data in addition to individual records.

Dr. Vivek Goel thanked the presenters, in particular for their thoughts on how the EAG could help the advance better collection, sharing, and use of data.

CHIMA Consultation Debrief

CHIMA presented their findings from surveys conducted over the past 2.5 years with industry, academics, professionals and the public about data for health and public health and its impact on the health information profession. Highlights from the results of the survey include:

• Technological advancements were consistently identified as the primary cause of change within the health information profession. The transition from paper records to electronic records and artificial intelligence (A.I.) were the two most common examples of "technology".
• 81.8% of surveyed public identified "ensuring my personal health information is kept private" as the most important aspect of their health information.
• 94% of surveyed public agreed their personal health information should be used to help friends, family, and Canadians (57.6% noted the information would need to be anonymous).

CHIMA members identified a lack of awareness of the professionalization of health information workers as the primary challenge. It was noted that of all the professionals who handle health information, only a small percentage are certified health information professionals.

EAG members echoed that health professionals would have educational credentials (Masters, PhD etc) but would not likely have a professional designation in health information. This discussion tied back to insufficient data literacy for health officials with decision-making authority (e.g., hospital CEOs).

Members also touched on the privacy and anonymity of data; while individuals seem to be comfortable sharing their data if it is anonymous, there is a need to clearly explain the processes to make data "anonymous".

Next Steps

The second report of the EAG will be published the week of November 29, during Digital Health Week. The next EAG meeting is scheduled for December 15.

pan-Canadian Health Data Strategy: Expert Advisory Group Plenary meeting: October 15, 2021

What We Heard

Introduction

The eighth plenary meeting of the Expert Advisory Group (EAG) took place on October 15, 2021. This report presents a summary of the feedback received during the plenary meeting.

Dr. Yann Joly and Alexandre Bernier of McGill University presented their work on Canada's data governance framework, arguing that the health crisis is in effect a data crisis, necessitating changes in how health data are shared between data custodians and other stakeholders, particularly for health research purposes. The chair of the EAG's Data Policy and Governance Working Group, Dr. Ewan Affleck, provided an update on the latest revisions to the Data Policy Working Group Report, which incorporated the input provided by EAG members at the last Plenary.

Presentation on McGill Report on Canada's Data Governance Framework

In summer 2021, the Public Health Agency of Canada commissioned a comparative review of health data sharing to help clarify barriers and potential solutions to improve the responsible collection, sharing, and protection of health data for the public good. Dr. Yann Joly and his colleague, Alexandre Bernier, presented their research into the laws and policies on health information sharing in Canada, specifically within the context of the COVID-19 pandemic and public health institutions. They illustrated the scope of the "data crisis" through comparisons to Canada's international counterparts, and identified that the problems around sharing health data existed at several levels of the health/health care system.

The presentation centered on the key concepts of privacy law, which govern the collection, use, and disclosure of personal information, defined as identifiable personal information (PI) or identifiable personal health information (PHI). We heard that systemic structural challenges make data sharing more cumbersome in practice than it appears to be, and that the legal barriers to sharing PHI often leads to a high administrative burden and a need for expertise that is often lacking or simply unavailable. This results in delays in data sharing that undermine the value of the data for the public good.

The other barriers identified by Dr. Joly echoed those previously identified by the EAG. Examples include the existence of complex administrative processes around data access and the fact that data sharing is typically considered low priority, compared to data generation. We heard that a major barrier is our federated health sector model, with its decentralized public health institutions and the lack of trust that exists between these stakeholders.

We heard that there are existing pathways to improved data sharing within the current legal and policy environment. These include governance measures that help limit the risk of re-identification (the process by which anonymized data is matched to its true owner), and federal and provincial public health institutions exercising their existing statutory powers to safely collect, use, and disclose health information for purposes related to activities and programs, public health surveillance, or in response to emerging crises. We also heard that legal reform would have the benefit of clarifying and centralizing practices around data collection, sharing and use. Specifically, federal, provincial, and territorial privacy legislation should be explicitly amended for this purpose, and that Canada's governments needed to move towards a model of data stewardship, rather than the current approach based on data custodianship.

EAG members reacted positively to Dr. Joly's research. They suggested that data protection law should be amended to allow for identifiable information to be used under specific contexts, and should set in place governance structures for oversight. Members also flagged the need for the legislative landscape to address the potential harm to collective health and wellbeing caused by not sharing data. Barriers in privacy law effectively contribute to inequity in health outcomes for many of Canada's marginalized communities, including Indigenous peoples.

We also heard that a culture shift – a shared vision on the importance of data sharing to drive better health outcomes – would be critical to addressing the barriers to data sharing in Canada. This means recognizing that responsibility for these system-wide structural roadblocks is the system itself, and not the data custodians charged with enforcing the legislation. While we wait for legislative reform, we must apply existing policy levers to more effectively facilitate data sharing.

Presentation on the Data Policy Working Group Report

Dr. Ewan Affleck updated the EAG members on the revisions made to the Data Policy Working Group's report based on the input that members had provided at the last Plenary.

We heard that these revisions introduce the notion of harm – that improved data sharing contributes to the avoidance or prevention of harm to both the physical and mental well-being of the individual, and the harm resulting from an individual's lack of control over their personal health information. The shared vision of "common need and common obligation" was reiterated. We heard how the current focus on data custodianship drives fragmentation, whereas adoption of the notion of data stewardship is the desired end goal. Dr. Affleck noted that Dr. Joly's presentation validated the critical need for this shift in perspective.

EAG members reacted positively to Dr. Affleck's update. They questioned the report's implications around the scope of what data are categorized as personal health information, which could potentially undermine data sharing for the public good. Dr. Affleck clarified that the working presumption is that individuals would control their personal health information for the specific use of managing their health, and that Canadians would understand that the use of data for the greater good would not require explicit consent for each data element shared while an individuals' privacy would continue to be protected. It was noted that the newly formed EAG Governance Working Group would be responsible for addressing the nuances around this issue, as well as addressing the notion of data stewardship.

Next Steps

The EAG will finalize its second report, which focuses on the broad actions needed under the Pan-Canadian Health Data Strategy (PCHDS) to support the creation of the health data foundation described in its first report. Work on Interoperability and Architecture will continue, and the newly formed Governance Working Group will begin its work.

pan-Canadian Health Data Strategy: Expert Advisory Group Plenary meeting: September 17, 2021

What We Heard

Overview of the Seventh Plenary Meeting of the Expert Advisory Group

The seventh plenary meeting of the Expert Advisory Group (EAG) took place on September 17, 2021. This report presents a summary of the feedback received during the plenary meeting.

The chair of the EAG's Data Policy and Governance Working Group, Dr. Ewan Affleck, summarized the Working Group's analysis of the current state of health data policy and governance in Canada, including a vision of an optimal state and recommendations to achieve it. The Interoperability and Architecture Work Group chair, Dr. Muhammed Mamdani, presented a proposed approach to developing a pan-Canadian Interoperability Framework, currently in development.

Finally, the EAG received an update on the Social License, Education, and Capacity work being undertaken by Dr. Kim McGrail, which will include a deliberative exercise with informed public advisory communities.

Data Policy and Governance Working Group Debrief

Dr. Ewan Affleck presented the work of the Data Policy and Governance Working Group, which was created to articulate the contents of the 'Data Policy in the Digital Age' pillar of the Health Data Foundation, presented in the EAG's First Report. The Working Group's analysis of health data policy in Canada concluded that while the health sector has adopted many digital age technologies to achieve its goals, it still relies on policies that were conceived in an analogue environment. The end result is a provider-centric model of data custodianship that suppresses data exchange to avoid liability for its mishandling by others under the auspice of protecting the privacy of individuals.

For the health sector to achieve its primary purpose per the Canada Health Act (1985), which is "to promote and restore the physical and mental well-being of residents of Canada", the working group concluded that health data policy and governance must be reimagined to be person-centric, where data exchange is acknowledged as key to improving both individual and population health outcomes. Recommendations from the Working Group will focus on promoting ways of achieving greater alignment across provinces and territories, and with international partners – a key aspect of which is adopting a data stewardship model that exchanges data for individual and public good while protecting the privacy of individuals.

Members were very supportive of the Working Group's narrative. They suggested that clear definitions are needed when articulating the optimal, person-centred state and the recommendations to achieve it. The concept of 'stewardship' in particular needs to be clearly described to avoid confusion about what stewardship roles entail. We also heard that these roles will require common training and likely professional affiliation to minimize variation in practice and support common approaches to health data.

Interoperability and Architecture Working Group Debrief

Dr. Muhammed Mamdani presented the work of the Interoperability and Architecture Working Group to date. The goal of the Working Group is to create practical recommendations to achieve pan-Canadian interoperability, rather than guiding principles. The work is still at its inception – currently, the Working Group is gathering insights of how interoperability works in provinces and territories, as well as other countries. Once the group has gathered these insights, it will develop data standards and an interoperability framework that articulate a common target state for jurisdictions to work towards.

Members were supportive of the direction the Working Group is taking. We heard that the agreement on the technical aspects of this work is easier to obtain than the collective political will needed to implement them across jurisdictions. Members noted the need to provide both positive and negative incentives to jurisdictions to achieve interoperability. We heard that health data systems are often viewed as too complex for interoperability, often by those desiring to protect the status quo. This argument is made despite the existence of other similarly complex systems like aerospace navigation or the tax system that are currently interoperable across jurisdictions. Members agreed that perspectives need to shift to view health data in the same way – a resource that must be shared to achieve optimal outcomes and common benefit.

Social License, Education and Capacity

Dr. Kim McGrail provided an update on the work on Social Licence, Education, and Capacity. The work is in early stages, and will support moving in the direction of data sovereignty and public input into data movement, with the understanding that the public thinks their jurisdictions are able to access and use data more effectively than they actually are. There will be two components to the work. The first will be to facilitate a deliberation exercise, with people who are already involved in public advisory communities, to discuss what the health data landscape should look like from the public's perspective. The second will be a background paper that articulates that perspective, including how a citizen's assembly could be supported and what it would look like. Members looked forward to learning more about the work as it progresses.

Next Steps

The EAG will develop its second report, which will focus on the broad actions needed under the pan-Canadian Health Data Strategy (pCHDS) to support the Health Data Foundation described in first report. The Data Policy Working Group is wrapping up soon, while work on Interoperability and Architecture and Social License will continue. A new working group for governance will be created as a successor to the Data Policy Working Group.

pan-Canadian Health Data Strategy: Expert Advisory Group Plenary meeting: June 16, 2021

What We Heard

Overview of the Sixth Plenary Meeting of the Expert Advisory Group

The sixth plenary meeting of the Expert Advisory Group (EAG) took place on June 16, 2021. This report presents a summary of the feedback received during the plenary meeting.

The EAG discussed the publication of their first report Charting a Path Towards Ambition, and members were encouraged to engage with the media to raise awareness of this work.

The EAG received a presentation from Dr. David Buckeridge, a leading researcher on health data management. He discussed his current projects, which explore challenges to data sharing, remarking that his preliminary results align with the EAG's findings to date.

The EAG also had the opportunity to meet with some members of the federal Deputy Ministers' Data Pillar Committee, where the discussion centered largely on the link between the value proposition of the pan-Canadian Health Data Strategy (pCHDS), public trust and engagement, as well as the need to address the immediate challenges to data sharing.

Finally, the EAG reviewed its summer work plan, including several working groups, to build on its advice in the first report. The EAG is planning to release two reports in the fall to inform the development of recommendations for the long-term pCHDS.

The Way Forward

Dr. Vivek Goel reminded members of the planned publication of their first report on June 17, 2021. EAG members were encouraged to engage with and respond to media inquires to raise awareness of this important work.

The pCHDS Secretariat provided the EAG with an update on the overall pCHDS engagement strategy, and the work underway. Targeted, facilitated sessions with health data stakeholders are planned, and will focus on exploring the barriers to data sharing identified by the EAG, and what practical solutions might be implemented to address them. Discussions with First Nations, Inuit and Métis (FNIM) organizational representatives have begun and will determine how these groups wish to engage in the pCHDS to align it with FNIM health data principles, strategies, and approaches. Broader, public consultations on the pCHDS are expected in fall 2021. These streams of engagement will come together as advice for a federal / provincial / territorial time-limited task group for FPT dialogue and pCHDS co-development.

Presentation: Dr. David Buckeridge

Dr. David Buckeridge, Scientific Lead on Data Management for the Canadian Immunity Task Force (CITF), presented the preliminary results of two research projects. Dr. Buckeridge's CITF work on data challenges focuses on two key areas: data governance, specifically the legal and ethical foundation for data sharing; and data management, specifically the tools to support interoperability. It was noted that challenges with data sharing can be categorized in two ways, data collected for research and data collected for health services; and that one of the largest concerns with data sharing is secondary sharing of data.

Dr. Buckeridge is also working on one of four background papers that will feed into the Canadian Public Health Officer (CPHO) report on the renewal of public health post-pandemic. He provided the EAG with a summary of his key findings, all of which align with the EAG's own findings to date. We heard that a key theme that emerged from his research relates to a vision for accessible public health data through inter-operable systems with a shared sense of purpose. The enabling components for this vision fall under three categories, including system structure (shared goals, governance, and financing); human and social components (public engagement and trust, and trained personnel); and IT and informatics (single systems that are fit for purpose, with mechanisms for interoperability).

Group discussion focused largely on the value proposition of data sharing. We heard that there needed to be a much clearer understanding of the benefit for individual systems' participation. Interoperability requires that the owner of each system invest resources and enter into governance frameworks that would allow data to flow within the larger system. This in turn allows others to use that data for their own purposes. The value for taking such action must be clearly articulated. We heard that measurement is an underlying issue of data management, and that this can be addressed through ensuring that systems are fit for purpose. We also heard that the digital transformation needed in health systems requires core skills/competencies that currently do not exist widely in the health workforce, and could be incorporated into academic curriculums. We also heard that key elements to articulate and communicate the value proposition for such a transformative change are public trust and engagement.

Q&A with Deputy Minister Data Pillar Committee

Invited Deputy Ministers expressed their appreciation for the first report and acknowledged its importance, indicating that a number of their own initiatives intended to leverage the EAG's work to support their own. We heard that it would be important to present the EAG-identified challenges to transforming health data management to the public in a way that communicates the real-world implications of the current state of the health data system, and the huge potential that health data holds if it was harnessed more coherently.

The remaining discussion centered on the value proposition of the strategy. We heard that it would be crucial to engage the public and highlight the jurisdictional complexity of data policy work. We heard that Canadian citizens should have more information about the power of health data, to be able to engage and ask for elimination of structural barriers to data sharing. Key stakeholders need to have honest, transparent conversations about the state of data. We also heard that building public understanding and trust would require the engagement and participation of Privacy Commissioners across the country. We also heard some concerns about addressing the challenges faced by the current data sharing needs of the system, as the COVID-19 response continues.

Next steps

The EAG will next be prioritizing the work of its sub-groups, specifically the Inter-operability and Architecture Working Group, the Data Policy in the Digital Age Working Group, and the Social License, Education, and Capacity Working Group. It was noted that Governance will be treated as a cross-cutting theme and each working group will be asked to consider how accountability should be addressed.

There was some discussion around the importance of case studies, with agreement on the need to include positive examples, and at least one example on the intersection of data used for surveillance, enhanced surveillance and research, and the impact on the timeliness of public health research.

pan-Canadian Health Data Strategy: Expert Advisory Group Plenary meeting: May 28, 2021

What We Heard

Overview of the Fifth Plenary Meeting of the Expert Advisory Group

The fifth plenary meeting of the Expert Advisory Group (EAG) for the pan-Canadian Health Data Strategy (pCHDS) took place on May 28, 2021. This report presents a summary of the feedback received during the plenary meeting. Discussion included the way forward for the EAG, outlining timing for the publication of the first EAG report and work to be undertaken to support future reports. The EAG also heard from Richard Alvarez, a Canadian health informatics leader, who spoke on the challenges and opportunities present in Canada's health data systems.

The Way Forward for the Expert Advisory Group

The EAG will be releasing reports that consolidate their advice to FPT jurisdictions that describes specific actions to strengthen Canada's health data foundation. The first report, to be released in June 2021, will outline the EAG's vision for health data in Canada in 2030, the persistent barriers that have prevented Canada from achieving this in the past, the initial areas for action to strengthen Canada's health data foundation, and the principles to guide the development and implementation of the pCHDS.

This first report serves to help draw attention to the issues highlighted in the report that must be addressed as part of a successful strategy. When released, the report will allow future discussions to focus on how to overcome these longstanding issues rather than continuing to discuss what the issues are. Following the release of the first report, the EAG will develop a second report, planned for fall 2021 that focuses on advice for action to be taken to strengthen Canada's health data foundation.

To develop that advice, the EAG will be working on articulating a future state of Canada's health data foundation in more detail and identify early steps to move toward that future state, considering potential solutions to the longstanding issues. This work will include envisioning health data governance in a digital age, articulating the current state of data policy and data sharing in Canada, and listening to the public for requirements for the trusted collection, sharing, and use of heath data for individual care and the public good. Further work will support the business case for a culture of data sharing and protection, as well as reflecting on how Canada's health data systems fare in comparison to other countries in the Organization for Economic Co-Operation and Development. In addition, effective health data systems that already exist within Canada could be studied and highlighted.

Finally, the importance of engaging with First Nations, Inuit, and Métis peoples in a distinctions based approach was highlighted. This should build on existing collaborations and support the opportunity to identify fora and approaches to discuss specific health data issues.

Preliminary Advice and Embedding Equity

The EAG reviewed feedback received from members to prioritize potential actions that could be taken under each of the four health data foundation components : social license; data policy for the digital age; accountable alliances; and data interoperability and architecture. Members agreed to further refine, prioritize and sequence these actions over the coming months. Members emphasized that equity needs to be deeply embedded as an outcome from these actions.

Discussion with the Front Line of Data - Richard Alvarez

The EAG heard from Richard Alvarez, former president of Canada Health InfoWay and the Canadian Institute for Health Information. Based on his over 30 years of experience in health data systems, he provided several insights to the EAG as they develop their advice for the pCHDS:

• COVID-19 has clarified the urgent need for health data systems change, but the case for stronger systems will require ongoing support and momentum.
• The policy environment has not kept pace with the evolution of health information technology.

Health data systems need leadership at the political, administrative and clinical levels. Policy change needs champions and sponsors.

• Both FPT partners and the health sector must be at the governance table. There should be an organization dedicated to data governance, staffed by those with experience in risk management.
• Solutions need to be supported by the funding necessary for ongoing operation and maintenance and the costs must be shared among jurisdictions.
• Incentives need to be put in place to encourage adoption of digitized solutions.
• There is a need to consider how solutions affect the workflow of care providers at the front line.
• Trust is an important issue, both between provinces, territories, and the federal government and between providers and the level of government to which they are accountable.
• Coherent data and communication standards are achievable if you mandate them. Provinces and territories will mandate standards if they make sense.
• Selection of priorities will be crucial to establish meaningful scope. Clearly stating the value proposition of changing data management will be key to securing support.

Next steps

The next EAG plenary will be held June 16^th with a focus on establishing working groups to support the EAG's second report. It is expected that working groups will continue the work over the summer with plenaries resuming in September.

pan-Canadian Health Data Strategy: Expert Advisory Group Plenary meeting: April 9, 2021

What We Heard

Overview of the Second Plenary Meeting of the Expert Advisory Group

The fourth plenary meeting of the Expert Advisory Group (EAG) took place on April 9, 2021. This report presents a summary of the feedback received during the plenary meeting. Elements of the long-term pan-Canadian Health Data Strategy (pCHDS) were further discussed and refined. The EAG also discussed the recent Auditor General's report COVID-19 Pandemic Report 8 - Pandemic Preparedness, Surveillance, and Border Control Measures, which recommended the creation of a pan-Canadian health data strategy, to help address both long-standing and newly identified challenges impeding public health surveillance activities in Canada. Finally, the EAG received a presentation on how improved health outcomes for Canadians could be achieved through greater access to data that is linked across health and socio-demographic domains.

Draft Vision, Principles, Scope, and Definition of the Data Foundation

The EAG determined that equity should be a foundational principle for the pCHDS to ensure it helps reduce existing health system biases and contributes to improved health outcomes for all. Existing data systems are centred on improving health outcomes for the average person. An inclusive pan-Canadian health data strategy must be able to identify and better address health needs in all communities. For example, some people may not be represented in datasets due to health system access limitations and due to a perceived sense of risk associated with sharing their health information. To harness the power of data to inform health system decisions, a focus on equity and data literacy in the pCHDS would help Canadians feel confident their data will be protected and used for their benefit.

Securing public trust in governments and data holders to manage health data effectively must also be at the forefront of the pCHDS. Canadians can enable positive change in the collection, sharing, and use of data when they understand both the impacts of barriers to health data sharing and how a new approach can address them. The EAG believes that Canadians would be dismayed by Canada's limited capacity to use health data for individual and public good, both during and between public health events. Further, the EAG believes public engagement is essential for effective implementation of a pCHDS. A public-centred approach across all aspects of health data management is needed to drive change and meet Canadians' needs. This approach is being explored and implemented in other countries (notably in Europe), where the protection and sharing of health data for the public good is understood to be one way that communities can equitably benefit from advances in science.

The EAG also cautioned that the current model of data custodianship and consent in Canada, which was created in a time of paper-based records, has been carried forward into the digital age. It is possible now to use new digital data approaches that enable the ability to simultaneously share and protect data. The current system creates system-wide disincentives for the sharing and use of health data both within and between jurisdictions, as has been highlighted by challenges in data sharing during COVID-19. The EAG advises that jurisdictions must move beyond the "custodial model" of data management towards an approach more appropriate for the digital age. A co-developed pCHDS must move Canada into the future – not just catch up to current best practice. When successfully implemented, the pCHDS will enable jurisdictions to adopt equitable, next-generation health data management approaches that simultaneously increase public understanding of health data and contribute to a healthier Canada.

The EAG discussed whether the overarching goal of the pCHDS should be system reform or transformation. Given the nature of the systemic problems with Canada's health data infrastructure, bold transformation in data management is needed to deliver on the promise of improved health for all Canadians through better decision-making using health data. The steps to achieve transformation must be incremental and iterative, learning from past attempts and proving the value of a cohesive approach.

Auditor General's Report on PHAC's COVID-19 Response

Rhonda Kropp, Vice President of the Corporate Data and Surveillance Branch at the Public Health Agency of Canada provided an overview of the recent Auditor General's COVID-19 Pandemic Report 8 - Pandemic Preparedness, Surveillance, and Border Control Measures, which included a recommendation for development of the pan-Canadian Health Data Strategy. There were three main findings in the report related to data and surveillance.

1. PHAC should investigate better data infrastructure for public health surveillance data.
2. PHAC should move forward on the technical annexes for the Multi-Lateral Information Sharing Agreements.
3. There are foundational issues impacting the flow of information during the pandemic that should be addressed through a pan-Canadian Health Data Strategy.

EAG noted that a key challenge during the response was a lack of sharing data within some jurisdictions between health system silos and between jurisdictions and PHAC. When shared, data can be incomplete or not fully reliable. EAG members noted the lack of sharing may come from data being unavailable rather than unwillingness; regardless, lack of data has negatively impacted the jurisdictional responses to COVID-19. In looking forward, improved data collection, sharing, and use between the federal government and provinces and territories should be considered a key component for health system funding agreements. Furthermore, the EAG suggested that there be clear accountability measures for meeting agreed upon objectives, outcomes and targets in a timely, measurable manner.

Presentation – "Best in Health"

Don Drummond, Stauffer-Dunning Fellow and Adjunct Professor at the School of Policy Studies at Queen's University, presented a draft paper entitled "Best in Health" to EAG members. The paper argues that Canada has the ingredients to be 'Best in Health' globally; however, we do not have the right balance between health promotion, prevention, and response to achieve optimal outcomes for Canadians. Greater access to data linked across health domains and socio-demographic information would help achieve a better balance.

Questions from EAG members focussed on how to generate political and public attention on the systemic challenges identified in the report and previously by the EAG as well as how engage the public on this issue.

Next steps

The pCHDS Secretariat will develop engagement and consultation tools based on the EAG work to date for used during targeted engagements, beginning Spring, 2021.

pan-Canadian Health Data Strategy: Expert Advisory Group Plenary meeting: February 19, 2021

What We Heard

Overview of the Second Plenary Meeting of the Expert Advisory Group

The third plenary meeting of the Expert Advisory Group (EAG) took place on February 19, 2021. The group discussed themes resulting from its four working groups' deliberations to date on initial areas of focus for the pan-Canadian Health Data Strategy (pCHDS). The EAG also examined a case study for COVID-19 vaccine surveillance data. This report presents a summary of the feedback received during the plenary meeting for each of the working group themes.

Working Group 1: Data Assets, Standards and Literacy

We heard there is need for shared language that can be used across the Canadian healthcare landscape to provide clarity and consistency on terms. A robust lexicon would help ensure a shared understanding that would increase the timeliness and quality of data and data processes and support effective communication. The public and the health workforce should be equipped with a strong foundation of health data literacy.

It was also suggested that a cohesive approach to data standards that works across jurisdictions and different data practices is needed. This approach would also support alignment to international standards where appropriate.

The working group also recommended that the current state of health data infrastructure needs to be articulated, including what is working and where deficiencies are. This will help conceptualize a future state where the system is coherent, well-aligned, and workable, along with the high-impact steps to get there.

Working Group 2: Data Collection, Sharing, Culture and Governance

We heard that data governance should be rooted in the fact that data increases in value when shared. An analogy was made to the role of an urban planner, whereby cities ensure that individual buildings are designed for both the building and the broader community through zoning and regulations. A similar approach for pan-Canadian data governance may be effective, with clearly defined minimum specifications for data and data processes.

Furthermore, data cultures would need to change across various levels of government. There has been endorsement of previous strategies at senior levels, but implementation has not necessarily followed.

Finally, it was suggested that playbooks for data access could be created to highlight how it should happen in different contexts. These playbooks would identify opportunities for incentives and accountability to create responsible value through data sharing along the health data supply chain while protecting privacy.

Working Group 3: Legal, Ethics and Privacy

We heard that a privacy and access toolkit could clarify how to navigate data sharing in various jurisdictions and clearly describe the discretion held by organizations. Currently, differences across jurisdictions, combined with processes for access that are often onerous, do not incent the creation of value along the health data supply chain.

There is an opportunity to move towards a consent driven, patient centric approach to data management that still provides sufficient data quality and granularity for analytics, and allows for implicit consent in some cases. The approach to consent must consider the long-term impact of consent along the health data supply chain and through changes in data standards for sustainability.

The working group also recommended that common definitions and cohesive legislative requirements for data custodians and consolidators would help overcome challenges performing cross-jurisdictional analysis. This would include guidance on what data is sharable, how it can be shared, and with what levels of consent would aid creation of insight.

Working Group 4: IT/Interoperability, Use and Sovereignty

We heard that the approach to (IT) vendors should be differentiated based on size. There is a need to ensure bargaining power with larger vendors, while providing opportunities to smaller vendors to gain market access.

Additionally, it was recommended that health information architecture requires a hybrid model that combines centralization and dispersion to serve local data needs as well as pan-Canadian functions. This would support data-informed care while also supporting data for health policy, public health, and both traditional and AI researchers. This would be aided by minimum datasets to ensure that key data are linkable.

Lastly, working group members felt that we need to give prestige and value to the roles of people who are working in data management, including data custodians, the private sector, and research ethics board members. There also needs to be consistency in how these roles are carried out.

Presentation on COVID-19 Vaccine Surveillance Data

The EAG reviewed a case study for COVID-19 vaccine surveillance data. During the presentation, there was an overview of vaccine surveillance data flows and the challenges associated with the current landscape. Following the presentation, the EAG noted that the challenges associated with vaccine surveillance are the same as had been identified for the longer-term strategy. It was recommended that case studies for the strategy should note successes in dealing with these issues during the pandemic.

Next steps

The next set of working groups meetings will consolidate ideas and evolve those into recommendations through March, leading to a plenary meeting in April. The draft recommendations will be provided to the Data Pillar ADM Committee and the federal-provincial-territorial governance structure.

The EAG will also provide feedback on the engagement plan, including ideas of organizations to be engaged for awareness, input, and buy-in later in the year.

pan-Canadian Health Data Strategy: Expert Advisory Group Plenary meeting: January 18, 2021

What We Heard

Overview of the Second Plenary Meeting of the Expert Advisory Group

The second plenary meeting of the Expert Advisory Group (EAG) took place on January 18, 2021. The group focused on the overall vision and direction for the pan-Canadian Health Data Strategy (pCHDS) and principles for its development based on lessons learned. They also examined a current use case for genomic data sharing, and advanced discussions on areas to be addressed in the pCHDS. This report presents a summary of the feedback received during the plenary meeting.

Vision and direction

We heard support for the provisional vision and direction as well as several suggestions for enhancements and clarifications to sharpen the focus and improve outcomes. We heard that increasing the emphasis on future-oriented language and on equity particularly towards populations with diverse needs including rural and marginalized populations. We also heard the need to clarify 'health data' to bring in social factors (notably social determinants of health) and clarify language related to First Nations, Inuit, and Metis peoples' data as being 'distinct and not separate". We heard about opportunities to improve data literacy to include capacity in the public and health workforce; increase empowerment to include public participation in their own care as well as incorporate and leverage common definitions where possible (e.g. Quality of Care from Institute of Medicine).

Principles for development of the pCHDS

We heard valuable feedback on a provisional set of principles for development of the pCHDS, informed by lessons learned from prior related efforts. We heard general support for the provisional principles as well as several suggestions for refinements and improvements them. We heard the greater emphasis of federalism is both a challenge and an opportunity – in particular toward taking advantage of differences across jurisdictions to develop leading practices for data and opportunities to learn from each other to enable a pan-Canadian approach. For data literacy, we heard support to include the broader health workforce to improve capacity for data use. We heard recommendations to explore opportunities for public engagement and advocacy to support the development and implementation of the strategy.

We heard several key considerations for success of the strategy. For example, we heard that the design should to be future-looking to respond to emerging trends and data needs such as digital systems and demands of machine learning. We heard the importance of aligning with existing international and domestic leading practices and standards where possible and appropriate (such as human rights, accepted data principles, and terminology). We also heard that a strong focus on equity and respect for First Nations, Inuit, Metis peoples and other populations who have experienced historic health inequities (e.g. rural, marginalized) is important for the strategy. We further heard that the outcomes of the strategy should be bold and noticeably better than an incremental improvement to the status quo.

Use case for genomic data sharing related to variants of SARS-COV2

The EAG reviewed a case study for genomic data sharing related to analysis of variants of SARS-COV2. During the presentation we heard about barriers experienced in bringing together lab data across jurisdictions which negatively impact the ability to generate timely insight. We learned that Canada lags behind peer countries in the length of time to share data for genomics (<50 days vs. >150 days in Canada). We heard that many of the challenges experienced in this use case were consistent with the lessons learned discussed earlier in the meeting.

Following the case study, we heard that Canadian Public Health Labs should be engaged with to dig deeper into the noted challenges. We heard that legislative differences and interpretations across jurisdictions should be examined and communicated as they result in data not being shared, or being highly aggregated when shared - both of which negatively impact the ability to do needed analysis. We also heard suggestions to further explore and articulate the impact of challenges related to inconsistent standards for genomic and supplemental data across jurisdictions – related to time to collect and prepare data for analysis.

Identify areas to be addressed

During the meeting areas to be addressed in the pCHDS were discussed and agreed upon. We heard that there are four key areas to be addressed:

1. Data assets, standards, and literacy (including expanding data capacity among data users)
2. Data collection and sharing
3. Legal, ethics and privacy, and
4. Technology that supports data flow, use and sovereignty

We heard support to form working groups for each of these areas to facilitate the development of recommendations for the pCHDS.

Next steps

We will incorporated EAG recommendations into the vision, direction and principles for review by the Data Pillar ADM Committee. Significant engagement with federal, provincial and territorial partners will be undertaken to co-develop the vision, direction and principles for the pCHDS. Working groups will also be established and their respective scopes further elaborated as the groups are formed.

pan-Canadian Health Data Strategy: Expert Advisory Group Plenary meeting: December 9, 2020

What We Heard

Overview of the First Plenary Meeting of the Expert Advisory Group

The first plenary meeting of the Expert Advisory Group (EAG) took place on December 9, 2020. The Chief Public Health Officer of Canada, Dr. Theresa Tam and Deputy Minister Les Linklater provided opening remarks, members introduced themselves to the group, background on the pan-Canadian Health Data Strategy (pCHDS) was provided, and members were given a demonstration of the COVID-19 Public Health Data Portal.

Group Introductions

During group introductions, we heard that:

• Health and public health data needs to be harmonized and flexible to enable linkage with other datasets and make high impact decisions, including for marginalized populations.
• Data needs to be able to flow seamlessly across jurisdictions, overcoming real and perceived barriers related to data privacy.
• Citizens and practitioners need to be engaged in the development process of the pCHDS, including thoughtful education of stakeholders on health data and its importance.
• The pCHDS must be aligned with existing data governance frameworks developed by First Nations, Metis, and Inuit peoples.
• Health equity and health literacy must be considered during the development of the pCHDS.
• There is a need to resist the idea that fragmentation and jurisdictional complexities were part of the intended design of the Canadian federal system.

Demonstration of PHAC's COVID-19 Public Health Data Portal

The COVID-19 Public Health Data Portal was presented to members, including a brief overview of dashboards, capabilities, and current limitations. We heard that comprehensive, standardized data collection at point-of-care is important and that additional feedback may be required going forward on the potential of this tool.

Next steps

Draft materials for the EAG will be developed to review at the next meeting to explore different elements of the pCHDS. Working groups will also be established and their respective scopes further elaborated as the groups are formed.