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From the moment she wakes up, until the moment her head hits the pillow again, Karen Gill is either checking her email or on the phone.
As the primary caregiver for her husband Ivan, 61, who became quadriplegic following a car accident 24 years ago, Karen dedicates her time to researching information, ordering supplies, coordinating medication, setting up specialist appointments, and following up – again and again – on test results. And that's on top of meeting Ivan's everyday needs.
"I'd go to the ends of the earth if it'll make things better for Ivan," says Karen.
After 42 years of marriage, Karen's devotion to Ivan is unmistakable, but finding the right support and services is a constant struggle, and some days she is ready to pull her hair out.
"Most of the time I feel like a broken record trying to get people to understand what I need and what I'm asking for," she says. "I put out fifty feelers to get one good response."
Formal support for patients and families
The risk of burnout Karen lives with is exactly what Dr. Cathy Craven, Senior Scientist, Physiatrist, and Medical Lead of the Spinal Cord Rehabilitation Program at Toronto Rehab, and her research team are working to combat.
This month, in partnership with Spinal Cord Injury Ontario, they're piloting the Virtual Integrated Platform for Spinal Cord Injury (VIP4SCI) – a virtual care platform that will deliver a formal, integrated, network of support to people with spinal cord injuries.
Led by Spinal Cord Injury Ontario, in partnership with ForaHealthyMe Inc., a virtual care solutions provider that developed the platform and blends technology with clinical protocols, the project is one of 15 that received funding through Ontario's Health Technologies Fund.
The platform connects Spinal Cord Injury Ontario resources and peer support services to health informatics, and coordinated virtual care solutions specifically for individuals with spinal cord injuries.
"People with physical disabilities tend to have a small, informal network of family and friends they can rely on," says Dr. Craven. "What they need is a rich, formal network of experts who can coordinate the right services at the right time."
Dr. Stuart Howe, Chief Executive Officer at Spinal Cord Injury Ontario, agrees.
"A common challenge facing people with a spinal cord injury is the ability to access primary care and community support close to home," says Dr. Howe.
"As a non-profit, Spinal Cord Injury Ontario is delighted to be leading this project so we can bring our life-changing services right into peoples' homes, regardless of where they live."
VIP4SCI will connect patients with specialists in physical medicine and rehab, peer support, social services, family physicians, and a Spinal Cord Injury Ontario regional service coordinator who will play a key role in triaging questions and concerns.
Features will include email, scheduling capabilities, a medication management system, a journal to help track goal setting, and telehealth services, which are critical for spinal cord patients who need to access health expertise remotely.
"If you are living with a spinal cord injury and suddenly don't feel well, it can be very challenging to access the right care, especially if you don't live near a rehab centre" explains Dr. Craven.
"This platform can help people understand their symptoms, and figure out what can be managed virtually from the comfort of their own home."
Platform will benefit patients, physicians, and the healthcare system
Beyond solving accessibility issues for patients, the platform will also support their family physicians by taking the role of case-coordinator off their plates, allowing them to focus more fully on delivering medical care, and connecting them with peers who have expertise in managing patients with disabilities.
Dr. James Milligan is the director of the Mobility Clinic in Kitchener-Waterloo – a family health team that is collaborating on the platform.
"As a clinic that helps people with physical disabilities receive accessible primary care services, we will be supporting individuals and their physicians virtually, via messaging or videoconferencing," he says.
"One of the greatest challenges facing people with spinal cord injuries is finding a family physician who is comfortable taking care of their complex health conditions," explains Dr. Craven.
Spinal cord patients live with an average of seven tertiary conditions.
"Through the platform, a physician in North Bay would have the back-up of the team in Kitchener-Waterloo, and get ad-hoc consult services, as needed," she says.
By making care more accessible, the developers also expect to see savings for both patients and the healthcare system.
"I am confident we will see a reduction in transportation and parking costs for patients," says Dr. Craven. "And I am cautiously optimistic that we will see a reduction in direct healthcare costs, as low acuity issues are prevented from escalating."
Making improvements in real time
Delivering innovative solutions is priority at Toronto Rehab, where clinicians and researchers work together to build on areas of excellence and find new ways to safely care for highly complex patients.
The role of Dr. Craven and her team of research fellows, including Drs. Brian Chan and Matheus Wiest, is to evaluate the impact of the platform on patients, healthcare professionals, and the medical system.
"We have people with complex problems who need innovative solutions now," says Dr. Craven.
"We're not waiting until the end to determine if this pilot is successful. We'll be giving rapid-cycle feedback throughout the process, and if we can find a way to make the platform work better, we have a moral obligation to do so as soon as we can."
"We take great pride in developing solutions like the VIP4SCI," says Courtney Cole, CEO and Founder of ForaHealthyMe Inc. "The data generated will allow the researchers to identify and develop new models of care in treating and managing patients with spinal cord injury across the province."
What excites Dr. Craven most is how the platform has the potential to deliver health care and community-based support in a completely new way.
"We're bumping people out of their silos and creating the opportunity for members of their network to interact and share information," Dr. Craven says. "This will hopefully result in better cumulative care for our patients."