193 Yonge Street Toronto, the study site
I want to write about a research study that isn’t the first I ever participated in - I was a participant in the clinical trial of saquinavir, the first ever protease inhibitor back in 1996 – but certainly the longest running. I’ve written about this before, but it’s due for an update.
Why? Because it strikes me as important for people living with HIV to understand how and why they are researched, what it feels like - and because research opportunities pop up all the time, determine whether it’s for them.
I’m going to write about the OHTN Cohort Study (OCS). It’s a research study from The Ontario HIV Treatment Network (OHTN) that collects clinical, social and behavioral information on a subset of people living with HIV in Ontario. The information is used by researchers to answer important health and social questions about HIV. It covers roughly a quarter of those living with HIV in Ontario.
So if a researcher wants to know how many in the cohort, for example, are smokers and if they are trying to quit, it’s there. How many have undetectable viral loads? How many are dealing with housing issues, mental health issues, neuropathy, other health conditions, HIV and non-HIV related?. What kind of sex are we reporting? All this and much more is there too.
I was enrolled via my HIV clinic in 1996. Back then it was called HOOD (the Ontario HIV Observational Data Base) and I was enrollee number 13 at St Mike's. I’m now the second longest survivor in that initiative as HOOD changed to OCS, gathered steam and now has close to 4,000 active participants. And because I have been associated with it so long – longer than anyone working on it, in fact – I feel a certain fatherly affinity with it, and an interest in how my data is used.
Research sometimes gets a bad name. Some people living with HIV feel like they have been studied to death. I don’t feel as much a guinea pig as a contributor but I come to the task, as I think any contributor should, with an eye for what works and what doesn’t, what’s intrusive and what isn’t. For example you don’t have to ask every question that is asked of you - and sometimes I won’t. I can be grumpy – most people know that, But I’m mostly pretty compliant because I know what is being collected is valuable. More on that later.
Last week found me at an office building in downtown Toronto, an outpost of St. Michael’s Hospital. I’m there each year for a neuro-psychological evaluation. That means ahead of me is a battery of tests and questions, most of which I’m quite familiar with; it takes two and a half hours and I’ll come out with $50 in my pocket for the trouble. And in truth I always feel I’ve earned it.
The session starts with a description of what I’m in for. “You may experience stress. You don’t have to answer any questions you don’t want to. Some of these exercises will test your limits. You may feel frustrated.” And sometimes I do. When I’m asked to repeat a list of twelve nouns, for example, early on, and I can only remember six or so, I feel sad. My memory isn’t what it was. Aging isn’t for cissies.
But testing our cognitive abilities as we age is important, so I gamely soldier on. Things get easier when I’m asked to insert rows of shaped little pegs into shaped little holes – against the clock. I’m good at this, even with my left hand, so I like it. I do reasonably well too at another memory test. Researcher guy taps a series of randomly spaced blue blocks, up to seven at a time, and I have to repeat the sequence. Then he does it backwards. I stumble a bit but get that this isn’t easy.
These practical tests take about an hour and then we settle in to answer probably the most detailed questionnaire ever. The questions – hundreds and hundreds of them - probe my smoking history, my use of drugs and alcohol, my housing circumstances, my sexual history, my ailments, my sense of wellbeing, my living arrangements, even my income. It’s very comprehensive and I see where it’s going. I’m thinking some of this is really good stuff to know about us and that without it the extent of our collective problems will never be addressed. So I’m kind of pleased that I’m only mildly irritated by the end. It’s a long session without a break after all, and I tell researcher guy that. So we joke about a lunch being served next time – or at least a nutrition break.
And then I’m given $50 and disappear into the downtown foot traffic, feeling tired and just a little bit proud
Most research has irritants after all, and these are covered off in a consent form, signing of which had happened early on in my session. Mine is six printed pages. It tells me of the benefits and risks of participating, how the information will be collected and shared, how my privacy us protected, how I can withdraw if need be. I’m encouraged to read it while researcher guy waits. I like it. No problems. So I signed it.
I liked how I had a chance to talk about what the research is used for. Researcher guy hands me information about this – about studies on the sexual health of men in the cohort, for example, and directs me to the OHTN's Rapid Response Service website page to show me other ways in which the data is used to satisfy authorized requests from the community for data on various aspects of living with HIV.
We didn’t touch on the 90-90-90 issue and how Ontario is measuring its progress, along with the other provinces and countries around the world, in reducing HIV to a much more manageable epidemic. So participating in the cohort tells us how well we are doing in terms of contributing to important markers like being engaged in care, on treatment or attaining an undetectable viral load. True the cohort only represents a quarter of those in Ontario living with HIV, arguably the most engaged and that has been an issue in the past. But efforts are underway to expand our data collection to cover those NOT in the cohort by linking in data from viral load testing labs, for example, which is more comprehensive than cohort data alone.
Bottom line it’s nice to be counted. It’s nice to know that my data is included, that my data is useful to others, that it contributes to our efforts to measure our progress in ending HIV. No guinea pig, just helping out like only people living with HIV can.
If you want to learn more about the cohort, live in Ontario and want to find out how you can get involved, go here.