This project focused on healthcare barriers related to respiratory infection risk. We worked collaboratively with people living with chronic physical health conditions, their loved ones, and advocates in British Columbia. The focus of our research is on chronic health conditions that increase risk associated with respiratory infections and post-viral syndromes. We are interested in understanding how healthcare practices and policies related to COVID-19 are impacting healthcare access of people living with chronic health conditions within British Columbia.
Pilot Study
We recently conducted a pilot study, surveying people across British Columbia from May – July 2026. Our goals were to learn about community research priorities and ways to make research participation more accessible. The survey was shared with community organizations supporting people with chronic health conditions and disabilities. People could participate if they had a chronic physical health condition, were a family member or caregiver of a person with a chronic physical health condition, or an advocate for people with chronic physical health conditions. A total of 159 people responded, 141 of whom live with one or more chronic physical health conditions.
What we learned
Most respondents had a chronic physical health condition and many reported multiple conditions. The most commonly reported conditions were ME/CFS (44%), dysautonomia (including POTS) (24%), and Long COVID (23%).
On the survey, we shared examples of research priorities related to healthcare access in the context of ongoing high respiratory infection risk. These topics were identified as priorities most often:
- Practices or policies that improve safety when accessing healthcare (e.g., masking, air filters) (83%)
- Policies and resources affecting accessibility of healthcare services (e.g., transportation, timing of appointments, masking policies) (81%)
- Healthcare providers sharing incorrect information or ‘gaslighting’ patients (77%)
- Experiences of contracting respiratory infections during healthcare appointments and hospital stays (75%)
- Healthcare provider training on COVID-19 or Long COVID (75%)
- Refusal of healthcare providers to wear masks or respirators (74%)
- How patients with chronic physical health conditions want healthcare providers to support them during a respiratory pandemic (73%)
- Concern about getting a respiratory infection at a medical appointment (63%)
- Strategies for not contracting respiratory infections during healthcare appointments (62%)
Respondents shared many additional research priorities in the areas of health systems, healthcare practices, innovations, patients experiences, and diversity and intersectionality.
When asked about how we can make research participation accessible for people with chronic physical health conditions, survey respondents strongly endorsed:
- Participating online (98%)
- Receiving written information in advance of meetings (69%)
- Short meetings (62%)
- Receiving information in different formats (e.g., written, visual, audio, video) (46%)
- Honorarium for participating (44%)
Additional ideas focused on ways to structure meetings, communication, research ethics, and research methods specific to synchronous activities, virtual spaces, in-person activities, and surveys.
Next Steps
We have drafted an article with the full results of the study and will link it here once published.
We are working with people with lived experience, community organizations, and researchers to design the next phase of this research project and apply for funding support. We will announce future opportunities to participate on this page and through our community partners.