We require expanded and accessible COVID-19 data in Ontario

Issues of fullness and accessibility of data are central to the understanding of any pandemic and the design of effective policy responses. This is particularly the case with a novel virus such as COVID-19. Given the relatively limited testing in Ontario, RNAO has expressed concern about deficiencies in the available data. For example, we supported an expanded case definition that incorporated into the COVID data clinical identification for untested individuals. We also repeatedly called for counting deaths including suspected cases when the person was never tested, such as in nursing homes with outbreaks. We have also asked Dr. David Williams on numerous occasions that reporting on hospitalizations include both confirmed and probable COVID-19 cases.

We have asked Dr. Jennifer Kwan, a family physician in Burlington, Ontario, to expand on this key topic. What follows is her article. I encourage you to follow her on Twitter – her feed is an excellent source of useful data on COVID-19.

COVID-19 has caused a major shift in everyone’s routines, with personal sacrifices being made in different ways. Apart from health risks, people are also suffering financial and economic loss, having procedures, appointments, and surgeries postponed, and missing out on major life events such as weddings and graduations. It is also a lot to ask of people to remain indoors despite the approach of summer. The public deserves a clear picture of the COVID-19 situation in order to be informed and help understand the justification for social distancing measures. Public Health Ontario continues to make significant improvements on data reporting, including the announcement of a new data platform called the  Pandemic Threat Response (PANTHR). However, there remain many questions to address.

Comorbidity. Researchers studying the health effects of COVID-19 on populations require data on underlying comorbid conditions, and ask whether it is being gathered and analyzed. In the federal epidemiological summary there is only mention of four major groups of pre-existing conditions - respiratory disease, cardiac, diabetes, and other. Could this be broken down into more specific categories while ensuring patient anonymity?

Social determinants of health. Although COVID-19 can infect anyone, some groups face pre-existing barriers that impact on their access to health services, and/or face increased risk of infection and poorer health outcomes. Is data being gathered on the socioeconomic determinants of health, such as income, employment status, and race? Could this additional information be published, so that disparities can be addressed?

Excess deaths over normal trends. How does the number of overall deaths from all causes compare to the same timeframe in previous years? COVID-19 may cause deaths from unrelated diseases since people may delay or avoid seeking appropriate medical attention, such as for heart attacks or strokes. What about deaths specifically related to respiratory or flu-like illnesses?

Healthcare workers: As of Apr 19, 2020, there have been 1267 cases in healthcare workers. 644 were infected in long-term care and 90 in hospitals. What about the remaining 533? Were they infected at work, or was it suspected to be due to community transmission? If it occurred at work, were there any concerns about PPE shortages? What kind of work was it - high risk aerosolizing procedures, or routine patient care? Was the likely source of infection a patient or a staff member?

The report also mentions one death of LTC staff, and no hospital staff. However, media reports at least two healthcare worker deaths - Christine Mandegarian, a 54 year old PSW who worked at the Sienna Altamont Care Community (Scarborough) and passed away on April 15, as well as a 58 year old  environmental services employee at Brampton Civic Hospital who passed away on April 9.

Long-term care homes and other vulnerable populations: As of Apr 19, 2020 there have been 1317 LTC resident/patient cases and 249 reported deaths. Were the LTC residents offered transfer to hospital for treatment, intensive care, and/or ventilation? Did they pass away in the LTC home or at the hospital? Could there be a centralized list published of the 114 LTC outbreaks in Ontario? Why does the provincial modeling data released on April show 127 LTC outbreaks instead of 114?

Long-term care homes are only one of the many vulnerable populations that are disproportionately affected by COVID-19. What about outbreaks, cases, and deaths in retirement homes, homeless shelters, and correctional facilities? What about home care? Indigenous populations? What percentage of the total do they contribute to?

ICU and hospitalization: ICU and ventilation case numbers have been reassuringly stable over the past week. However, was it because patients improved clinically well enough to be discharged, or did they deteriorate and pass away? What is the average duration of hospitalization, ICU admission, and/or time on a ventilator?

Testing: With regards to testing, there have been gains made in the number of tests per day. However, the province previously reported the number of persons tested, then shifted to the number of total tests completed (including potentially multiple tests per person). If the data is already available, why not report both measures? What is the current lab capacity, and what is the average wait time for results? Is it significantly different between regions? How many tests are being done in the community, versus in LTC or in hospital settings? How many tests were initially negative, then positive on a repeat test, and vice versa?

Ontario continues to improve on its reporting on pertinent COVID-19 data, however there remain more questions than answers. Additional data must continue to be gathered, analyzed, and presented to guide in the understanding of the COVID-19 pandemic in Ontario. It will help Ontarians understand why everyone’s lives have drastically changed, hopefully to achieve better outcomes in the long-term.

RNAO: We thank Dr. Kwan and want to reinforce the urgent need for data transparency and access. Comprehensive data collection and data sharing are vital to measure pandemic curve performance, prevent outbreaks in vulnerable communities, plan an exit strategy from large-scale self-isolation, and prepare for future COVID-19 waves. Without comprehensive data collection we act blindly. If data is collected but not shared, that is unacceptable. Our Prime Minister and Premier say: We are all in this together. RNAO agrees, and access to comprehensive data is essential to leaving no one behind.

As Premier Ford said when the first pandemic projections were presented on April 3, history will judge us, adding that we can and must write a better final chapter. At RNAO we agree with the Premier, and part of making the final chapter better is to ensure there is comprehensive data collection and full transparency – in particular about COVID-related deaths. It is unthinkable that we are only counting “confirmed” persons, but those who die as “suspected” cases are not counted. We must know that those lives lost to COVID-19 – whether tested or suspected – are all lives that we should count and remember. We must allow families and communities to grieve collectively – because #togetherwecandoit. We must have a full account of the toll of COVID-19.