Clinicians and researchers in British Columbia are applying a learning health system model to the study and treatment of long COVID.
Published in NEJM Catalyst, a new paper describes the work of the Post-COVID-19 Interdisciplinary Clinical Care Network (PC-ICCN), which was established in June 2020 as a partnership among the Provincial Health Services Authority, British Columbia’s health authorities, patients, and research organizations. The network also offers support for primary care providers.
The PC-ICCN offers education, care, and research opportunities to support patients experiencing post-COVID symptoms and their health-care providers. It aims to support the best possible outcomes for people recovering from lingering symptoms after COVID-19 infection, through education, care and research.
The PC-ICCN coordinates patient-oriented research that leads to rapid learning and data-sharing to improve care. It offers opportunities for both researchers and patients to get involved in post-COVID research to support people living with symptoms.
To complement its clinically-based research efforts, PC-ICCN is a partner in the Long COVID Patient Experience Project, which was developed to connect people living with long COVID and health researchers to learn together about the impacts of long COVID. The network is supporting the project by reviewing proposals from researcher(s) who want to access the data collected through the project.
Hiten Naik, M.D., a research fellow at PC-ICCN, is lead author on the paper, which explains that “the network’s clinical program is anchored to Post–COVID-19 Recovery Clinics (PCRCs), which are staffed by an interdisciplinary team of nurses, allied health professionals, and internal medicine physicians.”
The network has a research team that uses clinically ordered laboratory and patient-reported outcome measure (PROM) data captured into its central Patient Records and Outcome Management Information System database during clinical care.
In its first two years, the network had 6,439 referrals to the program, of which 4,014 (62.3 percent) were accepted. Patients from all five regional health authorities in the province were represented and came from a variety of ethnic backgrounds. In total, there were 7,116 PCRC assessments, of which 59.6 percent were virtual.
The network gradually increased the number of virtual group education sessions per month, and within the first year, there were 803 sessions that were attended by 778 different patients, the researchers noted. Among the subset of PC-ICCN patients who completed at least two PROM questionnaires and either completed the group’s 18-month pathway or were discharged earlier by a physician, 40 percent had improvement in their health-related quality of life, and 36 percent had stability.
“Altogether, the network highlights the value of an LHS model to simultaneously care for and learn from patients who suffer from long Covid,” the researchers concluded.
Earlier this year, the Canadian Institutes of Health Research (CIHR) announced a $20 million investment to support a pan-Canadian Post COVID-19 Condition Research Network called Long COVID Web, and a $9 million investment from the Public Health Agency of Canada (PHAC) to Cochrane Canada and GRADE centers at McMaster University to develop clinical practice guidelines on post COVID-19 condition (PCC).
The Long COVID Web research network work with more than 300 researchers, clinicians, people with lived experience of COVID-19, partners and representatives from Indigenous communities across the country to develop accurate diagnostics, treatments, and rehabilitation strategies for PCC.