In my last column about HIV research I talked about how, as people living with HIV, research and researchers are both important and omnipresent. We may just be the most studied population in the history of the earth. Back in the day, in fact, the black humour that has surfaced in our community from Day One used to say if we don’t die of AIDS we’ll be researched to death. In fact the irony of this is that it has been the fruits of research that have kept us alive, kicking and making fun of ourselves.
I’ve always liked, by the way, that we are able to see the funny side of our predicament. Founder Brian Finch was famous for that in his Acid Reflux website of days gone by and our accomplished PositiveLite.com writer HIVisHilarious represents the latest version of that phenomenon.
In any event, The Ontario HIV Treatment Network Cohort Study (OCS) which I’m featuring today has a funny side too. I rub up against it once a year on the second floor of St Michael’s Hospital in downtown Toronto.
Being a participant in the OCS, which I have been since Day One, involves an annual check-up, not of the physical kind (I get that on St Mike’s fourth floor, quarterly, and yes – that data ties in to OCS too) but of the mental variety. I mentioned last time about the list of nouns I have trouble with, which forms one tiny part of the data collection process. I hate the list of nouns. Here’s what happens. My research assistant slowly says about fifteen words, something like this: “tennis – messenger – hat – greed - parsnips - gasoline - bat - overalls – monkey - suitcase - canoe - elephant - water - orange - castle” then asks me to repeat as many as I can.
This isn’t easy. It gets even less easy when, at his request, I have to try to remember those nouns ninety minutes later.
Then there is the tic-tac-toe-like board where, one-handed, I have to fit these oddly shaped metal pins in to a series of equally oddly shaped holes with my right hand. There must be about thirty of them, and it’s a timed exercise. Then I have to do the same thing with my left hand, again timed. Tricky, although not as tricky as the list of nouns thing, which I actively dislike doing, because failure – and there is always at least partial failure - annoys me. Sometimes I fail on the nouns epically, if I’m tired. The pins-in-the-holes thing is actually kind of fun, and I’ve got quite good at, in a hamster-ish kind of way, over the years.
What does this measure? We are talking here about memory and cognitive functioning, the ability to do complex tasks which require brain/motor powers. It’s all part of the series of practical tests and interview questions participants take. The Cohort Profile describes what is gathered in these sessions: “demographical, immigration, race and ethnicity, employment rates and occupation, income and education, housing status, cigarette smoking, alcohol use, risk factors for HIV prior to diagnosis and date of HIV diagnosis, health-related quality of life and depression, use of non-medicinal drug use”. That’s the data from those taking a short-form interview process. The longer form, which is used at St Mike’s*, includes additional collection of data regarding ”alcohol dependence, cannabis use, symptom distress, body change and distress, health-related quality of life and health preference, cognitive functioning, adherence, depression, social support, stigma, recent stressful life events, chronic stress and early childhood adversities, mastery, coping, use of dental services and complementary and alternative medicines and neuropsychological abilities (attention and working memory, complex psycho-motor efficiency, learning and memory) and prevention and risk behaviours.”
As for all data collection, OCS collects that information without ever receiving a participant’s name or other identifying information, such as their health card number.
Participants are compensated either $20 for the short form or $50 for the long term annual interview, which latter takes about two hours. I must confess I always come out thinking I’ve earned it – the process isn’t the easiest to get through, but at the same time it feels good to contribute to our collective knowledge of what it is to be living with HIV.
The list of data gathered that I referred to earlier is a big list, capable of fueling impressively comprehensive research questions, and I’ll focus on some of those results in the months to come. But if that list seems exhaustive, it isn’t. It‘s supplemented by much more – the anonymously identified clinical data, collected as a result of my doctor’s visits PLUS laboratory data - blood work and the like - that is an equally important part of the data base. In my case my blood work results go straight from the lab to the data base twice a year ; the results of my quarterly check up with my care team at the Positive Care Clinic– essentially how I’m dong from a health perspective, including any untoward developments, are transcribed from my medical chart in to the data base by a research assistant at a later date. This process has evolved over time, as more sites have implemented electronic medical record-keeping.
Just how big is this data base? From 1995 to 2012, a total of 5,644 Ontario participants have been involved and 27,720 person-years of observation have been studied. This is a longitudinal study, which means it’s not a snap-shot but follows people over time.
Participants are recruited from hospital-based specialty HIV clinics, hospital-based family practice units and community-based primary care physician practices throughout Ontario. Toronto HIVers will be familiar with participating sites like the aforementioned St Michael's Hospital, Sunnybrook Health Sciences Centre and Maple Leaf Medical Clinic. Centres in Windsor, London, Hamilton, Kingston, Ottawa and Sudbury also participate. As of 2010, nine sites in Ontario were actively recruiting new participants and collecting data. These sites serve over three-quarters of HIV-positive patients undergoing viral load testing in the province. All participants provide written informed consent.
There is considerable diversity among OCS participants who broadly represent the make-up of patients receiving HIV care in Ontario. For instance the majority are MSM (men who have sex with men), 60.3%
What are the aims of the OCS? Back to the profile . . . .
- “To understand the psychosocial, behavioural and health context of people living with HIV, their patterns of health service use and issues related to mental health and addictions and other determinants of health.
- Examine HIV infection and its complications, treatment and its complications including adverse affects and HIV drug resistance, co-morbid infections, diseases and conditions, and social, psychological and other factors related to behaviours that pose risk for secondary HIV transmission.”
Looking at the last OCS newsletter, available on line here it’s interesting to see the kind of results that maintaining such a large data base is able to produce. There have been presentations on the effects of smoking in people living with HIV, for instance, stigma, syphilis testing, mental health and aging, work, adherence, lipodystrophy, coping skills (mastery) and dozens more. Nearly thirty analysis projects are currently underway. For those interested, a list of published manuscripts is here and of conference presentations here. Again, I’ll be covering some of those research findings in PositiveLite.com over the coming months.
Importantly, the OCS shares de-indentified (i.e. anonymous) data with other cohort studies to help answer research questions that cannot be answered by a single data base or geographic region. Collaborations include the Canadian Observational Cohort (CANOC) and the North American AIDS Cohort Collaboration on Research and Design (NA-ACCORD) which is part of the International Epidemiological Databases to Evaluate AIDS (IeDEA).
I mentioned the extensive community, including HIVer, involvement in the governance of the study in my earlier article, so I won’t repeat that here.
Clearly there is a lot happening here. So - all those list of nouns I can never remember and pins-in-holes I’ve (sort of) learned to master mean something. Even my urine is in there somewhere too and perhaps adds to our collective knowledge. I’m proud to say I was registered as participant number seven in this study. And I like to think that It’s in part due to studies like this I’m still surviving and participating, feeble-memoried or not.
*Different sites have different data collection requirements. There is only one other site that also has the cognitive functioning tests I’ve decribed, and that’s Sunnybrook Hospital. The Toronto Hospital also uses a long version of the questionnaire, though they do not have the cognitive tests.
Zack's involvement in a research project about HIV prevention among youth labelled with intellectual disabilities brought him on to a diverse team of community members, researchers, and service providers. The team really fostered intellectual creativity, and ultimately led to Zack's decision to pursue his PhD, nearly a decade after completing his MSW at Wilfred Laurier University. After traveling to St. John's in 2010 to lead a workshop on creating accessible services for LGBT youth that lead to the development of the Coalition for LGBTQ Inclusion, he felt drawn to the island. "When I got accepted into the PhD program at MUN, I knew this is where I needed to be."
