Heart disease is the leading cause of death among women worldwide. Despite this, it is often not recognized or treated as seriously in women as it is in men.

Cardiac rehabilitation (CR) programs are essential for reducing the impact of heart disease, but many women do not have enough access to these programs, especially ones that meet their specific needs. To address this issue, a research project was created to give women with personal experience a platform to share their voices.

The initial goal of the project was to provide CR programs and their women participants with personalized educational resources. The project aimed to inform, consult, involve, and empower women by addressing their unique needs and preferences, helping them stay engaged and succeed in their rehabilitation.

With the support of PiPER UHN, the project brought together 12 women from different backgrounds and locations across Canada. Over 5 workshop sessions, lasting more than 8 hours, these women shared their personal stories of dealing with heart disease and rehabilitation. The workshops gave them space to reflect on their experiences and brainstorm ideas.

As a result of this collaboration, the “Our Hearts Our Stories” website was created. This site shares the women’s personal stories, aiming to educate and advocate for better heart disease care. By sharing their experiences, they hoped to inspire other women to take control of their health and improve access to rehabilitation services.

For many participants, telling their stories brought a sense of validation and empowerment. They felt comforted by being heard and believed they were contributing to positive change for future patients. The project also highlighted the importance of community, showing women living with heart disease that they were not alone in their journeys.

The Team

Gayl McKinley is a Peer Support Leader for the Women@Heart Peer Support Program at the Canadian Women’s Heart Health Centre in Ottawa. A triple bypass survivor, she has spent six years empowering women with heart disease through support, advocacy, and education. Passionate about raising awareness and fostering community, Gayl is dedicated to helping women embrace their “New Normal” after a heart-related diagnosis.

Dr. Gabriela Melo Ghisi is an affiliate scientist at the KITE Research Institute, specializing in patient education and global access to cardiac rehabilitation (CR). She has led the development of evidence-based CR education across 10 countries and has published over 135 peer-reviewed articles. Recognized among the top global experts in CR research, she serves as an Associate Editor for multiple journals and holds leadership roles in ICCPR. In 2022, she was named a World Heart Federation Emerging Leader.

Ana Paula Bomtempo is a physiotherapist and PhD candidate at the Federal University of Juiz de Fora (Brazil), specializing in cardiovascular rehabilitation for individuals with diabetes. She is the center coordinator for the Diabetes College Brazil study, a multicenter clinical trial on exercise and lifestyle education. Currently, she is an international student visitor at the University of Toronto, supported by a CAPES scholarship.

* We acknowledge the following women with lived experience who were part of this project and approved the inclusion of their names in this website: Claire Gosson, Daphene Green, Donna Leistner, Gloria Snoddon, Jennifer Krutila, Jennifer Milk, Joan Clark, Leslie Dean, Mara Teitelbaum, and Zybina Richards.

PiPER

Pride in Patient Engagement in Research (PiPER) is a strategic initiative at University Health Network (UHN) launched in February 2022. As part of UHN’s Research Strategic Plan, PiPER aims to embed patient, family, and care partner engagement in research to enhance health outcomes and experiences. PiPER envisions UHN as a global leader in meaningful, transparent, and accountable patient participation in research. Its mission is to foster a culture where patient engagement is an integral part of health research, supported by organizational structures, technology, and communication strategies that ensure inclusivity and impact.

Learn more about PiPER here.

Resources

Canadian Women’s Heart Health Alliance: a volunteer network of experts and advocates aiming to improve women’s cardiovascular health across the lifespan. https://www.cwhha.ca/

Cardiac College for Women: a website with open access educational resources designed for women living with cardiovascular disease. https://www.healtheuniversity.ca/EN/CardiacCollege/Disease/For_Women/Pages/default.aspx

Women@Heart: a peer support program led by women with heart disease, for women with heart disease that aims to create a caring environment for women to learn from each other and support one another on the road to recovery. https://cwhhc.ottawaheart.ca/programs-and-services/womenheart-program

Connect With Us: Share Your Story!

Want to connect, share your story, or ask a question? We’d love to hear from you! Reach out to us at ourheartsourstories@gmail.com and be part of the conversation.