I came across an old post called The Long Form Census and Moi from 12 years ago. The funny thing is, although I did write the post, I forgot both the experience and writing about it. Lord, I am aging.

And speaking of aging and surveys that ask too many personal questions, I recently dropped out of a study I have been doing for a few years, the Canadian Longitudinal Study on Aging.

I had been participating willingly, accepting the seemingly endless hours of questions about my health, financial situation, physical activities, housing, social activities and memory. But after years of committed participation, I bailed on it mid pandemic.

First of all, I am not sure how useful these studies are. We tend to be studying the obvious. I was involved in a study myself once, as an interviewer. I asked breast feeding mothers about their experience with nursing, and the professor I worked with used the results in her study. Women who had mothers who breast fed were more likely to nurse their babies; that seemed to be the gist of it. Not a breakthrough discovery.

When I studied biology in Grade 7 in the seventies I remember our tough science teacher grilling on us how to write up an experiment. We had to follow a certain form, writing down what our hypothesis was, what we expected to find, and what we actually observed. I remember learning that this was not just the proper way to practice science, but the ethical way: the path of integrity was to make accurate observations and report what you observed, not what you wanted to see.

When I decided to participate in the CLSA I thought I would be contributing to the gathering of useful data, and according to the website, I would ‘help millions of people live better lives’. I was part of the Tracking Cohort, 21,241 people who participated in telephone interviews.

The study was meant to continue for 20 years, which is a bit daunting, but I started it in good faith. The participants were contacted every three years for long interviews, and every 18 months for shorter interviews, just to keep in touch.

I agreed to let them link my interviews with my health card. The information is ‘de-identified’ so you don’t have to worry about your name being connected with your interviews. The questions, they said, would cover health, activities and social supports.

I was quite good tempered at first. I even felt a moment of pride when I could answer that I had all my teeth (in a long section on dental health) or that I went for daily walks. I was also questioned about how many times I met with friends, or played a sport or participated in an organized activity. At different times I had no dance classes or friend gatherings and answering honestly compounded my feelings of loneliness or isolation. But if I could answer that my social life was fairly good, I felt like I was ‘winning’ at this study of my life.

I couldn’t help but consider that the interviews themselves were influencing my behavior. Just as a documentary filmmaker can never truly capture life without the influence of their presence and camera, the surveys were not simply collecting data, they were influencing data.

But I dutifully answered the questions about my housing, my hobbies, and my health. Where I began to break down was in the most scientific part of the interview, the straightforward memory tests. In this section, which I dreaded, a recorded voice would list thirty random words and then give me ample time to repeat as many as I could remember.

“Ball. Oven. Car. Arms. Computer. Cheek. Boat. Grass. Book. Hair…” I am not even sure I can replicate the randomness of the list. My brain tries to picture each item in order to remember it, and it quickly gets overloaded. I can remember approximately six words on a good day before I begin to lose my temper and start defending myself to the anonymous dead air of the recording. ‘This is just how I am, I have not gotten worse with time, this is not a sign of aging’!

If I just memorized the words, as my smart son advised me, I might have gotten further. But apparently this does not work for me. Maybe with practice I could have learnt how to memorize without a picture, but again, more behaviour modification!

My building irritation at failing the memory tests was not the only thing going wrong. The interviews were becoming increasingly exhausting and depressing. At first I found my perky, youthful answers made me grateful for the bounty of my life; yes, I have housing, and teeth too!

But as these excruciating interviews continued I started hoping that I wouldn’t live long enough to experience the lonely, toothless, ill health that was inevitably coming. It was depressing but I continued, I had come so far already! And I thought I was doing a good service for my community, or the wider world of ‘science’.

However, I had also begun to question the intent and the effect of the study. What were we learning, really? That exercising and having a laugh with friends is good for your health? We don’t know that already?

And then in the early 2020’s they asked us to give a pin prick of blood for a COVID-19 Antibody Study, to see who had been infected with COVID. I waited to hear my results with curiosity but I assumed I had not been infected as I had not been sick at all.

But now I was interested. This was data. Could some of us in the cohort think we had never been sick and were mistaken? Could we have contacted the virus and been ‘non-symptomatic’, as some were suggesting?

What did the infection rate look like pre, mid and post pandemic? Would the rate of infection be different between rural and urban people, or people of different financial backgrounds, or people of different racial backgrounds?

The blood samples were freshly collected data that was ready to to be analyzed within the context of the bigger longitudinal study. There were so many factors to compare and calculate. This was real science.

A half year later, or so (I can’t remember because of the COVID brain fuzz from that period) I received a letter saying that they were dropping that study. I was surprised, maybe even shocked. What a waste! 20,000 blood samples dumped and forgotten, in the midst of what they kept calling an ‘unprecedented’ time of our history?

This data was invaluable. What if someone in the study never contacted the virus at all. Was that possible, and if it was, what was different about that person’s background, health or life choices? How will we examine this possibility if we don’t continue the antibody test?

Within the longitudinal study we were asked detailed questions about our living standards and health choices; the data is there to be used in further studies. What were the numbers regarding hospitalization? Who suffered from ‘long covid’? What about the rates of illness and death post COVID?

As these questions were swirling in my mind I was contacted to participate in another CLSA interview. I told them I was disappointed about the blood sample study being dropped but I decided to continue with the study.

As I patiently answered the myriad of questions, grateful that they were not doing the memory test this time, I was struck by one question that brought me up short. After asking what my financial state was (much worse than pre-COVID, I answered) they asked, out of the blue, whether I had more or less trust in the government since the pandemic.

I paused. I answered with a question. Would the parameters of the study also include whether the participants were vaccinated or unvaccinated, I asked. Was my personal data going to be put in context or just float off in a sea of data, unexamined? Did I trust the government to allow scientists to examine the data and come to their own conclusions?

I wanted to see a follow up on the blood samples, and I wanted a scientist to examine the data with an open mind. I wrote, I emailed and I eventually talked to the current supervisor of the study, located in Halifax. He had no answers at first for why the blood test portion of the longitudinal study had been cancelled other than the funding had been pulled. So, I confirmed, the Federal government pulled the funding for this study?

When I finally got him to give me a straight answer he said that it was not necessary to continue the study now that the vaccine had clearly saved everyone. It was at this point that I said I cannot do these interviews anymore and please pull all my data out of the study.

Which, in the end, is a bonus to me because those interviews were shortening my life span for sure.