Project 434480

Women with heart failure (HF) do not always receive the best care possible in part because of issues related to their sex and gender. The overall goal for this project is to improve the experiences and outcomes for women living with HF in Canada. We will gather the personal stories of about 60 women from across Canada, in their own voices using video/audio recording, and create an online resource on www.healthexperiences.ca featuring these stories. Our aim is to provide support to other women and healthcare teams in making better decisions about their care. Our research team is part of an international collaboration to develop country-based collections of patient experiences first developed at the University of Oxford (www.healthtalk.org) and now involving expert teams of researchers and patients in 13 countries. In this Canadian study, the real-life variation in women's experiences of HF will be presented, including women whose stories are often unheard. Our work will be informed by a framework that considers the different roles in women's lives and how those roles may affect women's health experiences and outcomes. Our project team involves patients and clinicians as partners, who will help to guide the types of stories we collect, how we interpret the results, and co-design the online resource. The website will feature a listing of trusted resources for HF patients, with links to reliable sources of information and support. We will evaluate the use and usefulness of the website from different perspectives. National and local patient groups and collaborators, for example, HeartLife Canada and the Cardiac Health Foundation of Canada, and leading heart health experts will be directly involved as partners in this initiative. Final results will be shared with other women, researchers, and healthcare professionals at conferences and local meetings, and by sharing the website as broadly as possible.