All over my office are binders upon binders filled with records – appointment logs, blood work results, reports on side effects and emergency hospital visits. But when I look at these binders, I don’t see files or figures. I see people.
I have been a registered nurse for 10 years, and these days I straddle the worlds of cancer research and patient care in my work on clinical trials.
A clinical trial involves human volunteers, or participants, and is intended to add to medical knowledge. Participants are given specific interventions, such as drugs, devices, procedures or behavioural therapies, to test their safety and efficacy.
Such interventions go through a series of testing phases. They begin in a laboratory for testing on tissue cultures, then animals and eventually are given to human patients. If the results from all phases are favourable, these interventions are submitted for Notice of Compliance, by which Health Canada decides that an intervention’s benefits outweigh its risks and authorizes it for sale.
As a research coordinator, I have a responsibility to the study. I abide by 200-page protocols that I follow to the letter. I collect data on blood tests, bone marrow exams and medication dosages. I log all this information into a computer so the study’s sponsor, whether that is a hospital, university, foundation, pharmaceutical company or a combination of these groups, can see and manage the study’s results.
As of October 2014, there were 2,971 active clinical trials in Canada, 39 per cent of which were in cancer. Canada has the highest number of active clinical trials per capita among the G7 nations (a group of some of the world’s most industrialized countries that aim to collectively address challenging global issues), largely thanks to several unique attributes, including a diverse population, a universal healthcare system and a number of world-class universities and research hospitals that are considered leaders in scientific research.
Often patients come to us at their most vulnerable. They have an incurable disease, they have run out of options and the idea of an experimental treatment terrifies them. With every study, there is always an element of the unknown. In taking part in these studies, patients are in fact taking a risk.
When patients sign their names on consent forms, they are not just signing up for a medication, but for more visits to the doctor, more tests and more strict rules for when and how to take their medication. Some treatments can be aggressive and leave patients feeling weak and fatigued. But with these challenges comes a real sense of hope.
In research, we often use the term progression-free survival, or PFS. Clinically speaking, this means the patient is living with cancer but is not getting worse. Their symptoms are reduced, or sometimes they might have disappeared completely, however cancer is pervasive. Even if you reach complete remission for more than five years, cancer cells could still be lingering in your body.
But to me, achieving PFS means we’ve bought a patient more time – time until their next relapse, time until they need to try another type of treatment, or even time to get back on the golf course, time to finally take that trip to Italy, time to make it to a child’s wedding.
Providing patients with more meaningful time to spend with their family and friends, and the quality of life to enjoy this time, is the very reason I became a nurse.
A few years ago, a 77-year-old woman was wheeled into our clinic to see us. Her cancer had relapsed, aggressively, and she had limited treatment options available to her. The thing with cancer is that it can be controlled, but in some cases, it doesn’t go away. When cancer changes or grows, it could mean that the current treatment isn’t killing all the cancer cells or that the cancer has changed enough to survive the treatment. A physician then needs to find other options to treat the patient. That was the case for this woman, and we were her last stop. She was so weak that her entire arm was shaking as she signed the consent form.
Now she comes into the clinic, 79 years old, clad in a pristine white linen suit and she tells me about her winter trips to the US that she spends partying with her friends. We joke that she has a fuller life than I do. And every time I see her, we go over that first visit and I tell her, “Look how far you’ve come.”
“We talk about time, but the real result is quality of life. There’s no point in buying anyone time if it’s not going to be meaningful.”
– Rebekah Conlon
Things may not be perfect with this patient, or with a lot of other patients. For many, there is no cure. For some, they have exhausted all of their options and aren’t eligible for clinical trials. But to let patients know that science is always looking for new ways to rewrite the cancer story could encourage them to be part of their own healthcare experience and seek options that might work for them.
Patients are the most important part of research. Clinical trials and the people that participate in them open doors for experts to start – and continue – talking about even more research. They encourage healthcare professionals and patients to be educated about various treatment options. They keep the conversation on cancer care going.
Progress isn’t made in a vacuum; it happens because real people have trusted someone like me with their care. When I look at the binders in my office, I think these are all my people. Their little binders – in fact, big binders – are each a story that has helped propel research forward.
*As of the date of publication of this article, Ms. Conlon has left the CCRNS.