Living with long-COVID. Patient experience to inform policy makers and care providers
This project aims to gather and share stories from those known as the ‘long haulers’, who have lived experience of the longer-term effects of COVID-19. We will work with our patient partners across Canada and research partners in Ontario, Quebec, and Nova Scotia to conduct virtual interviews, using audio/video recording, with about 50 patients from across Canada. The findings will provide an understanding of how they coped, the impact on their day to day lives, their interactions with the healthcare system, and their needs for information and support. Our project team includes scientists, patients, clinicians, decision makers, and community partners. We will build upon our pilot study of patient experience of COVID‑19 in progress involving participants from Ontario and Quebec that includes a small sub-set of long-COVID patients. We are organized and equipped to incorporate diversity and inclusion of voices across gender, culture and racialized groups, age, a mix of settings, and severity of illness. Early results will be presented in a short film highlighting key themes, followed by a collection of online resources for patients and professionals, and a roundtable with patients, clinicians and decision makers to review findings and articulate key attributes of responsive, patient-oriented care for Canadians with long-COVID. We will build from existing frameworks, evidence and guidance from other jurisdictions. We are seeking a range and diversity of views to help identify the structures and processes required to address the clinical and psychosocial needs of patients, and help to rethink the health system response. Our team has a strong track record in illness experiences research and patient engagement ([www.healthexperiences.ca](http://www.healthexperiences.ca)); we collaborate with parallel projects (separately funded) on patient experiences of COVID‑19 in other countries (UK, US, Netherlands, Germany, Japan, Australia, Brazil, and Spain) using the same approach ([www.dipexinternational.org](http://www.dipexinternational.org)).