Support us in collecting data that matters most to people living with HIV!
A strong collaboration with people living with HIV (PHAs) results in well-informed research that can impact positive change. The Ontario HIV Treatment Network (OHTN) has a long-standing commitment to working with PHAs at various levels of research and is seeking your help.
Help us redesign the OHTN Cohort Study (OCS) survey to better understand the needs of people living with HIV in Ontario. Over 6,000 PHAs have participated in the OCS since 1996.
In early June 2018, we will host a catered dinner at the OHTN office in Toronto (1300 Yonge St, 6th Floor). After dinner, we will help facilitate a discussion about how medical care affects your health and quality of life. What we learn that evening will be used to inform a redesign of the cohort survey. There is no need for a scientific or research background; living with HIV in Ontario has made you uniquely qualified to assist in this effort. OCS participants are also invited to attend.
To compensate you for your effort, time and support we will provide:
- A catered dinner with peers and allies
- Reimbursement of transit costs
- An opportunity to participate in a thoughtful and lively discussion about HIV experiences
- Experience in collaborating with OHTN
- A chance to help shape one of the largest HIV studies in Ontario
If you’re interested, please fill out the survey here by May 15th, 2018 or sooner! The event will be held in early June. If you’re unable to attend the event, no worries! Please fill out the survey if you’re interested in future events or becoming more involved in our work.
The OHTN Cohort Study
The Ontario HIV Treatment Network Cohort Study (OCS) is a community-governed, province-wide research study aimed at improving the health and well-being of Ontarians living with HIV. Established in 1996, over 3,700 individuals actively participate at nine HIV clinics across the province.
The OCS promotes clinical, psychosocial and socio-behavioural research to inform government policy, clinical practice and other care and support services. OCS team members work with leaders in the fields of HIV/AIDS, hepatitis C and other sexually transmitted and bloodborne infections.
About the Cohort
Since 1996, over 6,400 participants have participated in the OCS. The OCS is the largest HIV cohort in Ontario and one of the largest in North America.
The cohort represents a diverse group of Ontarians living with HIV including men and women of different ages, sexual orientations and ethnicities.
A 2015 study assessing engagement in care among OCS participants between 2001 and 2011 found that 87% of participants were receiving regular viral load and CD4 tests; 77% were taking antiretroviral medication; and 76% had a suppressed viral load. You can read more about the study here.
Join the Cohort
If you were diagnosed with HIV between 2011 and 2016 and attend a participating OCS clinic, please talk to your doctor or nurse about how you can join. A list of participating clinics is available here.
Plain language fact sheets summarizing recent research findings are available on the following topics:
- Syphilis rates among HIV-positive gay, bisexual and other men who have sex with men
- Testing for liver and kidney disease among people living with HIV
- Improving depression screening among people living with HIV
- Chlamydia and gonorrhea testing among people living with HIV
- Gender differences in the severity of depression
- Psychological distress among women living with HIV
- Hepatitis C diagnoses among gay men and other men who have sex with men.
Information for Researchers
Researchers can access OCS data by completing the following steps:
- Submit an OCS Concept Sheet or an OCS-ICES Concept Sheet
- Request a Data Scan
- Develop a research proposal using the Research Project Proposal Checklist
- Sign an OCS Researcher Confidentiality Agreement
- Undergo scientific, community and ethical reviews.
The OCS Research Coordinator can answer any questions you have about this process.
For additional information, contact Madison Kopansky-Giles, OCS Coordinator: mgiles [at] ohtn.on.ca, 416.642.6486, x. 2224.
The OHTN Cohort Study collaborates with Public Health Ontario, the Canadian Observational Cohort Collaboration (CANOC), the North American AIDS Cohort Collaboration on Research and Design (NA-ACCORD), and the Institute for Clinical Evaluative Sciences (ICES).