Where is the Circle of Care?
This piece I wrote for the Master of Health Informatics Program at UofT. It really exemplifies how dysfunctional our governance system is.
Thank you :)
We inherit our systems of sin and woe, and our healthcare system is indeed languishing, in desperate need of someone to ‘rally the troops’ (Churchill, 1947). My vision for our future is to govern through a unified, healthcare, operating system; a system that organizes information and makes it accessible to those within the circle of care; a digital governance system. Throughout my career I have observed a lack of leadership in the computational space, where computers are essential to the work performed by the healthcare sector, and yet current systems are disconnected and do not accommodate the dynamics of pandemics and rapidly changing information and situations. And all throughout, personal health information (PHI) is missing from the circle of care. My understanding of our system is that it is dangerously inefficient, and health informatics is needed to improve productivity. What follows is my vision and understanding of health informatics based on my life and career experiences.
The Chief Medical Officer of Health of Canada, Dr. Tam, has discussed fragmentation of care in the healthcare system, and I myself have written about discontinuity of care during the pandemic (The Chief…, 2021). In 2022 I suggested to the medical officer of health of Toronto, Dr. De Villa, to declare a logistical emergency after witnessing hemorrhaging hours of labour spent copy/pasting data from one spot to another, ultimately impacting our ability to process case, contact, and outbreak investigations. This copy/pasting would worsen workload by precipitating the need for additional account privileges between multiple systems, and the need for additional staff to access and forward [copy/paste] information between organizations and systems.
During my career I have experienced frustration associated with the patchwork of stopgaps that is our healthcare system. In acute care, I did not have access to progress notes of intensive care nurses working in the same building (related to a lack of account privileges); the processing of physical paper was often a tedious, error prone task; and access to information was probably the most important aspect of our job, but it wasn’t always readily accessible. In addition to bedside, in public health I didn’t have access to progress notes of residents in my circle of care (namely residents in long term care and retirement homes (LTC & RHs)); and progress notes lacked standardization and underutilized digital tools and infrastructure. Worse, PHI was transmitted via email, often within excel files that had six character passwords that were broadly shared (and could have 100s of peoples’ PHI). This process of forwarding information burdened the staff of LTC & RHs and consistently lead to delays in reporting COVID-19 cases (as our organization didn’t have access to COVID-19 lab reports by default); moreover, we relied on facility staff to manually report symptomatic residents, rather than having a system that automatically flagged progress notes that contained words or phrases associated with contagious illness. These processes introduced additional workload and lag when connecting people to information, and arguably jeopardized the security of PHI. All these above situations have led me to believe we are dangerously inefficient and neglectful of the circle of care.
A recent example of discontinuity of care on the national level is in Moncton, New Brunswick, where a neurologist, Alier Marrero, was tasked with processing hundreds of pages of paperwork, rather than having an algorithm fill out the paperwork automatically (MacKinnon, 2023). Mr. Marrero was paid up to $349,999 by the department of health for the fiscal year ending March 31, 2020, and arguably, paying a neurologist that sum of money to process paperwork is suboptimal and costly (New Brunswick, 2020). In addition, the Public Health Agency of Canada had to send two epidemiologists to process the work in person. Had a unified, healthcare, operating system been in place, it would allow the full, logistical power of the internet to be exploited, allowing experts to view data nationwide in real-time, reducing travel costs, labour, and lag.
My own investigation into the public health unit of New Brunswick has been quasi-inconclusive. I wanted to analyze what type of paperwork (lab reports, progress notes, etc.) was being forwarded by Dr. Marrero and how many pages of each, to see how much of the work could be automated, rather than having a human directly involved. I couldn’t really do it though because of a much bigger problem: the lag. The average hospital produces about 137 terabytes of data per day (about 50 petabytes of data per year; Murphy, 2019). Over the course of 2 months, I was able to analyze 440 kb of data (4 pages PDF format), and even then I had not gotten an answer to my original question (each query could take a month to process). Consequently, there is a dearth in capacity between writing data and reading it because there is no unified system to organize the information. In the current system, I am asking another person to perform a physical search of their system, they may ask another person, management is involved, all this adds lag, reduces how much data is actually collected, and overall, reduces our capacity to read information in real-time.
I have witnessed similar issues during the pandemic. Worst-case COVID-19 estimates for Toronto were 30,000 people per day. Processing those numbers of cases cannot be done via email or an email/excel file combination (emails for example have size limits, and antivirus scans of emails could add to lag). Furthermore, no matter how many cases there were, we would always be behind real-time because it took more people to process the data (i.e. organize it) than the rate the data was produced. Each person arguably has a finite capacity of manually transmitting and organizing data in these situations, and I can speculate it does not add up to 137 terabytes per day; rather, it is significantly less, millions of times less.
My contribution to a unified, healthcare, operating system is amalgamating all the information we already have, supporting a default system, and promoting algorithms that improve health and efficiency. Such a contribution is supported by statute law in Ontario: the Health Protection and Promotion Act (1990) states its purpose is for “the organization [emphasis added] and delivery of public health programs and services”. I advocate for this because I want there to be intentional inclusion of people within the circle of care by unifying data; and when we include people within the circle of care, we promote equity and diversity of participation. Moreover, a digital governance system should have a transformative effect on the healthcare system, acting as a force multiplier. Right now, our healthcare system is so disorganized, we could have the cure for problems or ailments and not even know it. I want to contribute to that discovery; I may not be able to explore outer space, but that doesn’t mean I cannot find awe and wonder exploring new frontiers here on earth.
References
Churchill, W. (1947). The Worst Form of Government. Retrieved from https://winstonchurchill.org/resources/quotes/the-worst-form-of-government/
Health Protection and Promotion Act, R.S.O. 1990, c. H.7. Retrieved from https://www.ontario.ca/laws/statute/90h07
MacKinnon, B. (2023). Moncton neurologist asked for help, but alleges he was threatened with discipline instead. Retrieved from https://www.cbc.ca/news/canada/new-brunswick/new-brunswick-neurologist-patients-public-health-canada-review-files-alier-marrero-1.6933797
Murphy, K. (2019). How Data Will Improve Healthcare Without Adding Staff Or Beds (as cited in GLOBAL INNOVATION INDEX 2019: Creating Healthy Lives—The Future of Medical Innovation). Retrieved from https://www.wipo.int/edocs/pubdocs/en/wipo_pub_gii_2019.pdf
New Brunswick. (2020). Unaudited Payments to Medical Practitioners List. Retrieved from https://www2.gnb.ca/content/dam/gnb/Departments/tb-ct/pdf/OC/PA20-physicians.pdf
The Chief Public Health Officer of Canada’s Report on the State of Public Health in Canada. (2021). A Vision to TRANSFORM Canada’s Public Health System. Retrieved from https://www.canada.ca/content/dam/phac-aspc/documents/corporate/publications/chief-public-health-officer-reports-state-public-health-canada/state-public-health-canada-2021/cpho-report-eng.pdf