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8.1 million family caregivers wandering the wilderness of health care

November 2, 2016 By: Muska Ulhaq

The MaRS Centre for Impact Investing and the Royal Bank of Canada (RBC) are proud to announce the 2016 RBC Impact Entrepreneurs who were showcased at the 9th annual Social Finance Forum. The Social Finance Forum is the best place to engage and profile leaders in Canada’s diverse social finance scene and to capture advancements from the world stage.

I was 14. My father asked me again to stay home from school and be with mom. As far as I could tell, she was sickened with sadness. I would only learn later that she was bi-polar and that my being home was keeping her from the real threat of her taking her own life.

When loved one’s fall, families are the first to rise up. We love, so we care- the sentiment for most is really that simple but the experience of caring really isn’t.

There are more than 8 million family caregivers in this country keeping our fragile health care system propped up- 50 million more in the US. They’re the silent majority and the largest segment of the unpaid health care labour force. Most of these caregivers are like my dad was then- emotionally wrought, struggling with competing demands, untrained, navigating unfamiliar terrain, in short, disoriented and confused. Problem is their capacity to provide what amounts to 80% of all the care required for ailing family members is one of the most significant factors as to whether or not the caregiver – patient dyad can successfully navigate the health care journey.

My father and mother survived the journey. Their marriage didn’t. My father’s unpreparedness (to no fault of his own) had a long lasting ripple affect on his family, his work and his personal welfare.

This same ripple effect is now being felt in Canada’s health care system; Canada is aging, health care systems are overwrought, people are living longer in their homes with health related problems, and a huge chuck of Canada’s labour force is balancing work and care making it one of the biggest threats to Canadian productivity and workplace wellness.

There’s hope though. And that hope resides in caring Canadians themselves.

Working in the caregiver space for nearly 15 years and helping to grow The Caregiver Network ( into Canada’s largest virtual learning network for families has taught me a thing or two about the nature of care. The most important of which is that together, we can make things a whole lot better.

The sharing economy has proven that industry’s can be revitalized when we leverage our collective capacity and bring that capacity to bear on small or big problems. This is also true in health care. More and more we are turning to each to each other for advice, insight, and companionship as we wrestle with the inevitability of health related issues. And this sharing is not just conjecture. It’s proving to be helpful in diagnostics, adherence, treatment- across many critical health care verticals.

The future of The Caregiver Network is in line with this sharing economy and resides in something we are calling Huddol (yes like the huddle you’ll see in a sporting event). Huddol is being designed to capitalize on the know and smarts of 8 million Canadians who walk the caregiving path every day, stumbling and falling, rising and succeeding, but always learning; What treatments work best? Where are the best places to access help? How do you navigate complex systems? It might be no fun to get there, but many caregivers, by virtue of their persistence and willfulness, eventually do. We want to make it possible to crowdsource that collective intelligence and then render that crowd smarts accessible to anyone on the caregiving path.

Building on user generated health and social data, Huddol guides caregivers through the health care wilderness by intelligently connecting them to relevant peer networks, health care experts, and service providers so they can optimize self and patient care. In its simplest form, Huddol asks caregivers” what do you need most right now” and then uses that self reported information to connect them into the right communities with the right answers. These networks of care, or “Huddols”, as we like to call them, are vibrant groups of like-lifed caregivers, service providers, health care experts and community allies working together to improve health care outcomes. Leveraging the power of social sharing, Huddol keeps caregivers connected to the right people and resources, always.

So, how do we help caregivers thrive in the wilderness of health care without falling into a ditch of despair and distress? We make sure they don’t walk alone- we recruit 8 million others just like them and shine a very big light on the journey to wellness for both their own sake and those in their care.

By: Mark Stolow, Founder, Huddol