Heart Month 2023: Highlight on the Canadian Heart Function Alliance
February is Heart Month, an excellent opportunity to shine a light on heart health research and transplantation. At the Canadian Donation and Transplantation Research Program (CDTRP), we are fortunate to have many experts, professionals and patient, family and donor partners in this field in our network. All of these people are working toward one goal: to turn transplantation into a cure. However, the best way to reduce the need for transplantation is to focus on prevention and early detection of aggravating factors. According to the Government of Canada, “Heart disease affects approximately 2.4 million Canadian adults, and is the second leading cause of death.” (source).
The inception of the Canadian Heart Function Alliance
With these numbers in mind, Dr. Jean Rouleau, cardiologist at the Montreal Heart Institute, and Marc Bains, patient partner, heart transplant recipient and co-founder and vice-president of the HeartLife Foundation, developed and founded the Canadian Heart Function Alliance (CHF Alliance). This important and unique initiative in Canada is supported by the Government of Canada through CIHR in partnership with the Heart & Stroke Foundation of Canada, Mitacs, and the National Institute of Health’s National Heart, Lung and Blood Institute. (source)
In an interview with the CDTRP, Dr. Jean Rouleau deplores the lack of a single, uniform network for heart disease research. “There are a lot of people working in this area of research, but there was no network at the research level.” And yet, the numbers speak for themselves:
“It is believed that there are approximately 750,000 people in Canada who suffer from heart failure. One of the problems we have is that heart failure is diagnosed 50 to 80% [of the time] in the emergency department. (…) [And] up to 50% of people had symptoms 5 years prior to admission.”
– Dr. Jean Rouleau, Co-Lead of the CHF Alliance
Dr. Jean Rouleau, Co-Lead of the CHF Alliance
One of the goals of the network is to include research at all stages of life; from pediatric to the elderly, to represent all age groups. Since a pediatric cardiac research group was also working on a grant application, they decided to join forces and include them in the application. Dr. Lori West, Scientific Director of the Canadian Donation and Transplantation Research Program (CDTRP), acted as a matchmaker to connect Dr. Rouleau with the researchers, as several of them were part of the network, including Dr. Seema Mital and Dr. Samantha Anthony from SickKids Hospital in Toronto.
Patient partnership at the forefront
A key aspect of the Alliance is the integration of patient partners into the various layers of the organization. This is evidenced by the creation of the Alliance as a joint partnership of equals with Marc Bains, who is the co-lead of the network as well as the co-lead of the Patient Engagement and Empowerment Committee. Marc is also a patient who lived with heart failure, heart transplant recipient, and Co-Founder of HeartLife Foundation – a national non-profit organization advocating for heart failure patients and caregivers.
“The CHF Alliance is patient-driven and includes a vast demographic of patients and their family caregivers from rural to urban communities and from children to seniors from across the country. Although we don’t yet have a cure for heart failure, medical therapies and lifestyle changes can help people manage their condition. To that end, research – patient-informed research – is crucial. In fact, our HeartLife Charter of Patient Rights, which outlines a National Standard of Care for HF in Canada, includes the opportunity for patients to provide input into decisions regarding future heart failure research and underpins the CHF Alliance.”
– Marc Bains, Co-Lead of the CHF Alliance and Co-Lead of the Patient Engagement and Empowerment Committee
Marc Bains, Co-Lead of the CHF Alliance and Co-Lead of the Patient Engagement and Empowerment Committee
The Alliance’s research priorities were established by patients through questionnaires sent to several networks across Canada. Early diagnosis of heart failure topped the list of patient priorities, followed by translational research and prediction.
Education and training: the key to ensuring a quality succession
Another important aspect of the Alliance is the training of future and early career researchers. The group wants to use all the resources at their disposal to take this aspect even further. “It’s possible that some people who are at the beginning of their career, and who may not have had the full training in biostatistics and how to apply for grants (…) People come in with great training, but that side is not necessarily developed,” says Dr. Rouleau.
In this sense, the group is working on a grant opportunity for a bootcamp-style training program where participants develop a research project with the help of experts in the field. Dr. Rouleau cites the CDTRP’s Education and Career Development Platform as a source of inspiration and example of research success. Thus, CDTRP trainees and young researchers could benefit from this training while allowing them to apply their knowledge to research projects.
Another possibility for partnership between the Alliance and the CDTRP would be the formation of a joint group for research on advanced heart failure, which is less explored and addressed in research. The group would benefit from CDTRP’s expertise in the transplant community while collaborating on joint initiatives.
“We would benefit from the excellence of the CDTRP, which I think is an exceptional network.” – Dr. Jean Rouleau
Pushing the limits
Despite the fact that the Alliance is newly formed, it is already thinking big and far ahead with the intention of eventually taking the initiative international. The goal is to have a well-established network at the national level with a core group of people establishing the basic structures and policies before expanding internationally.
“The idea is to go out and get three or four countries at first and no more, to be able to form a core group of people who think together and then after that, people join the group, but the rules are already determined by the people who are the founders.”
Working collaboratively rather than in a pyramidal mode remains a priority for Dr. Rouleau, who wants to work in a respectful and democratic environment. “As CDTRP knows how to do so well!”