The CHIEF Executive Forum Fall Symposium took place on Thursday, September 22, 2022. 65 digital health and healthcare delivery leaders gathered in Toronto to to collaborate, exchange best practices, and share their expertise in setting the agenda for the effective use of information and technology to improve health and healthcare in Canada.
From notes written by Annie-Kim Nguyen (University of Waterloo); Aaina Aggarwal (George Brown College); Diego Duran-Arteaga (George Brown College); Mia Trillanes (Alberta Health Services); Tiffany Oei (Public Health Ontario; Alana Esty (CHEO); Ahmad Haroon Syed (Johnson Shoyama Graduate School of Public Policy, University of Saskatchewan); and Mobeen Lalani (University of Toronto)
Roundtable 1: Care anywhere and how to get there
Dr. Jonathan Choy
CTA – Setup an annual forum (e.g., e-Health) to continue discussions around access to virtual healthcare. Include perspectives from patients, providers and vendors around the positives and negatives of accessing this technology.
What are the greatest challenges when it comes to accessing virtual care? IT bears the brunt of any issues; we are still treating issues that arise in a piecemeal fashion, with access to virtual care and the system is fragmented. We need a seamless system which can merge both virtual and in-person care.
We need to do a better job marketing the benefits of virtual care and educating the public on the functionality of virtual care. For instance, Wellness Together Canada was rolled out relatively quickly after the pandemic, but people do not know about this free resource available to them. We need to focus our marketing on where we know people will look for this information.
Equity plays a huge role in accessing virtual care in Canada. We need to consider technology literacy for seniors and individuals who live in remote and rural areas who might have limited connectivity available to them. Around 70% of virtual care takes place via phone, how can we help those who don’t have access to phones? There is still stigma around mental illness and sometimes having access to a virtual platform might be the preferred method for those looking to access care.
Currently there is no national guidelines on what is clinically appropriate virtual care in Canada it is up to the discretion of the clinician. Instead of re-inventing the wheel when it comes to governance and virtual care, we could leverage best practices from other countries (e.g., Australia). Along the same lines we don’t have a standardized national procedure to measure patient safety when accessing virtual care.
Roundtable 2: Paving the way for a pan-Canadian data strategy
Eric Sutherland, Alvaro Mestre, Christine Sham
Focus on four core areas:
- Data privacy and public trust (how to engage with public with common language)
- Data policy (better approach for data sharing)
- Interoperability (data standards among vendors, gov, orgs; increase flow among all stakeholders; infrastructures)
- Data governance (structure of accountability; early efforts to focus on)
Data stewardship capacity to bring all components together. Where should data go from here?
Challenges include: overly strict standards for digital health privacy; hesitancy; paternalistic/protectionist attitude to patients and their data; lack of consent consistency/lack of time to explain consent; literacy gap between those who are less likely to give consent versus someone with a condition who is more likely to give consent; reliance on paper; siloed clinicians; health insurance implications. We have a fear-based mentality toward health data breaches: trust is broken when there are data breaches, and there is no way for the public to find out if they are directly affected. Current state is confusion and causing more harm than good.
We need: a patient of declaration of rights—patients want to be engaged in improving their own care. Is there an aggregate way for both research and ensuring privacy? Strategies could: start with basic health information and go from there (stepwise approach) or put the consent on the individual rather than the government.
We need: a framework for getting consent and a way to standardize consent among all the different healthcare stakeholders (e.g., hospitals, pharmacy, primary care). We need to view health information as a public good. We need legal authorization if/when it is in the interest of the population—in some cases data should be able for use without needing approvals from all healthcare related organizations. How do we build that trust in using health data for good? We need to establish a set of rules and regulations for everyone to follow (perhaps a third party to manage these issues) and modernize our approach to consent.
Next steps include: Reframing the question of healthcare data privacy to the public and creating a consistent approach; finding new ways to conceptualize consent. We can learn from other jurisdictions that are ahead on this. Make it simple to understand and administrate.
Roundtable 3: Health equity, data, and care—critical for success
Dr. Tania Tajirian, Dr. Lydia Sequiera
The government and the private sector across Canada are working to eliminate the inequality of access to technology and promote the many advantages of using technology in personal healthcare. Experts from the CHIEF Executive Forum unequivocally stated that access to technology is a health determinant and positively correlates with EDI and improved patient care. The following are key priorities to promote technology in patient healthcare:
- Removing systematic barriers so that all individuals have equal opportunities (those implementing new technology must be mindful of individual differences such as colour, language, beliefs, tradition, age, sex, gender, and physical and mental capabilities)
- We need to teach digital literacy (teaching/coaching technology in healthcare e.g. CAMH’s digital platform)
- We need to use data to quantify and measure the impact of technology in healthcare (NYGH are tracking the use of technology in the patient population of minorities to improve patient care with respect to EDI)
- We need to create a framework that uses artificial intelligence/machine learning and flags when to use technology for each patient
We have got to have devices (technology) for everyone! Not just for the privileged ones.
Roundtable 4. A bridge to the future—private and public collaboration
Keith Jansa, Karen McClure
- Nurture a relationship between public and private sector for delivery of healthcare. Software development and communication currently lacking.
- Can funding gaps be filled by private sector organizations?
- Citizens taking ownership of their data, having consent model and can share the data with the vendor who they trust. Design standards for data trust.
- Data on social determinants of health can be used to derive the health data analysis results
- Associations have a lot of data that can fill the gaps
- Privacy by design and open by design. Vendor community build all their system in open standard. Readily available, fluid, if the system or device is not open
- Private and public sectors need to come together to collaborate in healthcare; more government interaction with vendor community is required to facilitate this relationship
- Impose quality checks or assessments framework for health apps so users can make informed decisions.
- Create an improved consent model
- Build data trust (discount on insurance rates?)
- Insurance companies’ partnership with mental health companies to make up lack of funding
- Standards- HL7, ISO needs to be used for interoperability of the health data.
- Developing standards for the application.
- Private companies and insurance companies are very much interested in these standards. Lot of positivity for standards in the industry.