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Isabel Victal was first diagnosed with heart failure in 2010, two weeks after giving birth to her son. She relied on information cobbled together from different doctors and nurses to learn about her condition, supplemented by Wikipedia pages and Google searches.
"It was all mixed information that actually scared me even more," recalls Isabel. All in all, this process yielded equal parts correct and incorrect information.
A recent scoping survey conducted by UHN confirms Isabel's description of the piecemeal resources available to patients: a minimum of 21 English-language heart failure information websites were identified.
"There are good resources out there, but they're not well curated and collated," says Dr. Mike McDonald, cardiologist and Director of the Peter Munk Cardiac Centre Advanced Heart Failure and Transplant Program.
On top of that, Dr. McDonald explains, most web-based resources suffer from a lack of maintenance, meaning they often omit new evidence or breakthroughs in treatment.
The risk of unearthing incorrect or out-of-date information can be a major deterrent to seeking out online heart failure resources.
Dina Theodoropoulos has been caregiving for her mother for four decades, but has only recently begun to rely on internet-based information.
"Googling doesn't always feel safe, because I don't know what information is right, where it comes from, or how to interpret it," says Dina.
According to Dr. McDonald, another shortfall of web-based resources is the omission of the patient voice, or the "human" side of heart failure.
"It's often clear when you visit a website that it was created by healthcare professionals, rather than co-created with people with lived experience," he says.
In 2021, the Ted Rogers Centre for Heart Research began a collaborative remodel of its heart failure education website, officially launched as
"The Heart Hub" last month.
Guided by an advisory group of patients, caregivers, and clinicians, "The Heart Hub" was designed to address gaps in current web-based resources, create a community of support and foster patient agency. Topics covered by the site run the gamut from general health information on heart failure, to patient and caregiver personal stories and advice, to tools for self-management, to opportunities to participate in research.
"I wish 'The Heart Hub' had been around when I was first diagnosed with heart failure 12 years ago," reflects Isabel, who likened the site to an encyclopedia. "It's a great place to start learning."
Isabel herself contributed to the site, with her tips for
medication and symptoms self-management,
finding peace of mind, and
living with an LVAD.
"The Heart Hub" is also a useful tool for clinicians.
"As a physician in the heart function clinic, I can direct my patients with confidence to an excellent resource," says Dr. McDonald. "It's going to be a very useful hub for care providers, whether they're experts looking for information to hand to their own patients or non-specialists who want more perspective."
Caregivers and family members such as Dina will also find a place for themselves on "The Heart Hub" – a refreshing change from other resources that so often leave caregivers out of the discussion.
"There's so much information and guidance to help a caregivers' journey," explains Dina, who served as co-chair on the website advisory committee.
This guidance includes a
module on caring for someone with heart failure developed in partnership with the Ontario Caregiver Organization, links to
online caregiver communities and supports, and first-hand caregiver stories.
Now that "The Heart Hub" has launched, the team is eager to get the word out.
"People need to know that it's very helpful, very informative, very
real; created by
real caregivers," Dina emphasize. "This is a very important site, and I'm grateful for it."
There are big hopes for the site as it continues to be updated and expanded.
According to Dr. McDonald, the vision for "The Heart Hub" is that "it becomes the
de facto resource for heart failure education – not just in Toronto or Canada, but internationally."
"The Heart Hub" today.