CTN 336: Québec HIV Cohort

About The Study

The Québec HIV Cohort is built from the databases of multiple clinics providing HIV care in the province of Québec. The Cohort is used as a learning health system to improve the care provided to people living with HIV. The study allows monitoring, measuring, and improvement of different aspects of HIV care including the HIV cascade of care and cancer prevention in people living with HIV in Québec.

Background

Learning health systems refer to the use of existing health data and stakeholder feedback to guide improvements in care. The involvement of patients and care providers is key to learn from the data and implement changes for better care and patient health. This approach can be used to examine multiple aspects of care.

The Québec HIV Cohort was created in 2011 as a collaboration between the four largest clinics providing care to people living with HIV in the province. The Cohort was launched in order to better understand the evolution and impact of HIV on health and the care needs of people living with HIV, and to identify the determinants of therapeutic successes in the different groups of people living with HIV. The Cohort was founded and directed by CTN Investigator Dr. Jean-Guy Baril until 2020. Leadership then passed to CTN Investigator Dr. Alexandra de Pokomandy and the study now receives support from the Network. The Cohort was also expanded to include more clinical sites across the province, and its objectives were broadened to examine ageing, co-infections, and comorbidities affecting people living with HIV. The Cohort also includes data on therapeutic drug monitoring and HIV genotyping.

Funding was recently obtained to use the Québec HIV Cohort as a learning health system to improve the HIV cascade of care, and to improve cancer prevention in people living with HIV. The cascade of care refers to a framework outlining the steps in the delivery of HIV treatment and care: 1) diagnosis; 2) linkage to care; 3) on antiretroviral therapy (ART); and (4) suppressed viral load. The cascade helps care providers and policy-makers measure progress and identify gaps in care. Because cancer is one of the primary comorbidities of aging and of people living with HIV, examining current practices in cancer prevention and outcomes for people living with HIV is also important to optimise care and quality of life.

Study Approach

All patients ever followed at the participating clinics and who have had at least two viral load measurements since 2000 are included in the Québec HIV Cohort (over 10,000 individuals). The Cohort uses existing clinical data and participating clinics will be updated every six months. The study protocol ensures confidentiality of participants by triple coding, meaning that data used for analyses cannot identify individual participants. When ready for analysis, participants are only identified through a unique study number that even their clinic cannot identify. The Cohort is also being linked to provincial administrative cancer databases.

The Cohort is guided by a Patient-Partners Committee and a Scientific Steering Committee, which includes leads from each participating clinic and a representative from the Patient-Partners Committee. De-identified data can be requested through submission of a data request form, approval by the Scientific Steering Committee, and completion of data sharing and confidentiality agreements.