CEO blog: The research must go on

This week we crossed the threshold of the 100th daily email from Ontario’s COVID-19 Emergency Operations Centre. Over what is simultaneously a very long period of time and hardly any time at all, we’ve experienced changes in virtually every part of our lives.

Our governments at all levels have responded swiftly and with compassion to protect people and businesses that have been impacted from the economic fallout of the pandemic. In Ontario these measures included new supports and greater flexibility in existing programs for children with disabilities and these are important.

While the Government of Canada has rolled out financial help to protect many sectors during the pandemic, not everyone has been on the receiving end of this support. It’s time for Canada’s hospital based research institutes to be provided with the financial scaffolding that they need.

One of my favourite Twitter pals, Julie Drury (@SolidFooting), tweeted a quote from Michelle Obama recently: “Don’t ever make decisions based on fear. Make decisions based on hope and possibility. Make decisions based on what should happen, not what shouldn’t.”

In the early days of this pandemic (yes, already with the 20-20 hindsight) many decisions did appear to be made based on fear – and rightly so as there is much to fear about the new virus. One of those decisions was to shut down virtually all non-COVID-19 research and research funding.

Before the pandemic, there was no shortage of life-enhancing research happening in every corner of the globe, including at Holland Bloorview’s very own Bloorview Research Institute (BRI). The BRI is a world leader in childhood disability research and in 2018 we began an exciting new journey, launching the biggest expansion effort in the BRI history to scale up so we can impact more children and families around the world.

But the BRI, like all hospital-based institutes, relies on external sources of revenue including grants from government-funded research councils, foundations, donors and industry to sustain operations, employ its research staff and fund its trainees – the next generation of researchers. Such institutes are excluded from provincial health-care budgets and do not receive government funding in the same manner as publicly-funded universities. With funding sources now cut for an unknown length of time, and no end in sight to the state-of-crisis reality we find ourselves in, there is a huge risk to the research community across the country, which could have lasting and devastating impacts on the entire field of health research.

Of course I’m biased, but as I said at a virtual meeting with BRI staff this week, I’m particularly concerned about the impact on the field of childhood disability research which is a small and relatively young field. There is so much yet to learn. There are so many children and youth who do not have the access to research they need that will support the quality of life to which they are entitled. Without the research that happens at the BRI, those life-changing research efforts could be set back by a generation.

Of course, given the impact of COVID-19, the focus on research about this novel coronavirus – treatments and interventions, the vaccine which is our hope for going back to something like a new normal –is much needed. But as we all know, life goes on despite the pandemic (albeit disrupted). Babies continue to be born, accidents still happen that require people to visit the emergency department and children living with disabilities continue to face challenges living their day-to-day. Health research, outside of COVID-19, remains critically important and financial support is needed now more than ever to make sure our researchers can continue to work toward providing the best and brightest futures for children and youth and their families.

Despite the uncertainties in the research community I am thrilled that, with so many summer internships on hold or cancelled, we decided to move forward with our Ward Summer Student Research Program, hosted virtually this year. This program receives thousands of applicants each year and welcomes a small number of highly deserving undergraduate students to have the opportunity to work alongside some of Canada’s top disability researchers. Lunch and Learns and team building activities that expose young and ambitious scientists to the unique and specialized field of childhood disability research helps build the next generation of researchers.

There are 400,000 Canadian children living with disabilities and the BRI is focused on improving the quality of life for each one of them as well as their counterparts around the globe and generations of children to come. With our unique lens, with family leaders as partners in research, we fear that lost research funding today resulting from the unprecedented impact of COVID-19 will mean lasting and unforeseeable consequences.  We know that government has heard this call and is weighing it with many other compelling and urgent priorities. Everything we do at Holland Bloorview is based on hope and possibility. We are waiting and watching for the help we need now because research can’t wait.

_____

Julia

@Hanigsberg

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