How an association CEO turned her VTE diagnosis into an opportunity to improve research and patient care
If you ask Carol West to describe her blood clot experience, she refers to it as “very ordinary.”
Yet Carol’s personal story is anything but ordinary. While her blood clot diagnosis may be similar to that of many other patients, Carol’s unique journey has sparked a newfound passion for blood clot research and patient advocacy that is truly extraordinary.
Carol lives in Chelsea, Quebec, just outside of Ottawa, Canada, however she travels frequently across the globe for her work with non-profit organizations related to border management and international trade. Her business brings her to international locales from Europe to Africa to Southeast Asia.
It was a business meeting that set the stage for Carol’s blood clot story. Carol was rushing to a meeting on a rainy day when she slipped and fell. She went on to sit through the entire meeting, despite the pain. When she realized she could not put any weight on her leg, Carol immediately went to the emergency room and learned that she had a fractured patella (broken kneecap). She would need surgery to repair it within 24 hours
Though the surgery was successful, it led to unexpected complications. Over a period of several weeks, Carol was diagnosed with multiple blood clots, including a clot in each of her legs (deep vein thrombosis). Later, she experienced pain when coughing, which indicated a life-threating pulmonary embolism.
“I didn’t have preventative anticoagulants after my surgery, plus I was immobile for several weeks as part of my recovery. It was the classic case of ‘provoked’ blood clots due to my surgery and recovery,” she said.
Carol recovered well, and she is now on lifelong anticoagulants. However, she said that the psychological and emotional recovery can often be the most challenging aspects of trauma. Due to her frequent business travel, she now has regular concerns about long-duration flights.
“I used to not think twice about traveling,” Carol revealed. “Now I feel like I need to do a risk analysis before each trip. Should I wear compression socks? Is the flight duration too long?”
She noted that oftentimes the hardest part about a medical diagnosis is the lack of information and education for patients.
“One of the big things about blood clots is the mystery around them, in terms of education and awareness. Mystery always generates fear, and that is part of most patients’ stories as well,” Carol said. “Once I was diagnosed and went to the thrombosis clinic in Ottawa, I had a really positive experience. I was educated about the condition and I received the right treatment.”
During her recovery, Carol wanted to help advocate for other patients and survivors in the blood clot community. She volunteered to participate in a clinical trial and became aware of the Canadian Venous Thromboembolism Research Network (CanVECTOR), a Canadian patient-oriented program that is centered on VTE-related research, training and knowledge translation.
She was later asked by CanVECTOR’s leadership to get involved in further opportunities with the organization, and she agreed.
“I’m always doing something as a volunteer, and it sounded interesting and worthwhile. It was also completely different from what I’ve done before, and I knew I could learn from it,” she said.
Carol now serves as a co-lead of CanVECTOR’s Patient Partners Platform and has been involved in numerous research projects. She also serves on the CanVECTOR Scientific Steering Committee and especially enjoys knowledge translation opportunities to better explain information to patients and respond to questions they may have. She noted that CanVECTOR is currently seeking 3-4 new patients to join its Patient Partners Platform.
“Every patient partner at CanVECTOR has put their hand up to be part of the collective and contribute to a body of knowledge and sharing of experience that benefits everyone—more broadly than just yourself,” she explained. “CanVECTOR is about focusing on the broader community benefits, and I think that is impressive and really important.”
Carol is passionate about bringing the patient voice into VTE research and care, and she appreciates the projects that help standardize and improve processes for clinical researchers in Canada and internationally. She noted that CanVECTOR’s experience and tools can be used as a model framework for other countries to mirror and emulate in their own VTE research studies.
“When patients are on the sidelines, we feel that research is not as helpful as it could be. There are missed opportunities. Patients are a very useful resource, and it’s important to make meaningful space within places like ISTH for patients and to hear what they have to contribute,” Carol said. “A lot of that is relationship-building and talking to people. Patient partner communities and relationships can be friendly, welcoming and validating. It is such an investment in the future for the success of research organizations.”
To learn more about CanVECTOR, visit www.canvector.ca.