Music teacher composes second career as “patient researcher”
Seven years ago, when Hamilton music teacher Barbara Dolanjski was diagnosed with sepsis for the fourth time, she was placed into a coma and given less than a 10 per cent chance of surviving. Dolanjski was also on dialysis 24 hours a day due to kidney failure, and came perilously close to having both her feet amputated due to a lack of circulation.
“This research could lead to the development of age-appropriate sepsis education programs for schools, including a pilot study to test them.” — Dr. Alison Fox-Robichaud.
But the Hamilton Health Sciences (HHS) patient not only survived and avoided amputations. She thrived, returning to her full-time job as a grade school instrumental music teacher with the Hamilton-Wentworth District School Board. In her personal time, she launched a second career as a patient researcher by completing an innovative new, two-year online program that qualifies her to work shoulder-to-shoulder with hospital and university research teams on trials, or even on her own. Her current focus is a research project on sepsis education, led by Dr. Alison Fox-Robichaud, an HHS critical care physician and the scientific director of Sepsis Canada. She is also the HHS chair in sepsis research.
Battling sepsis
Sepsis is a life-threatening disease caused by an out-of-control response to an infection. It’s the deadliest health condition in the world, killing more people globally than cancer.
Dolanjski has health challenges that make her particularly susceptible to infections that can lead to sepsis. Meanwhile, damage from being in a coma during her fourth bout with sepsis left her with very low kidney function, and she’s currently on a waiting list for a transplant.
But even with continuing health issues, she has managed to continue teaching full time, work as a patient partner with multiple organizations and complete a two-year online training program offered through Sepsis Canada to qualify as a patient researcher.
New and innovative role
Patients have been the cornerstone of medical research for many years, by volunteering for studies where they try new medications, treatment regimens and lifestyle routines to improve and save lives. Many patients, including Dolanjski, also join patient advisory councils at hospitals where they received treatment to provide insights into patient care.
Dr. Alison Fox-Robichaud, HHS critical care physician and scientific director of Sepsis Canada.
But trained patient researchers are still fairly new in the research world. These patients combine their lived experience with the health-care system and passion for improving health-care in an entirely new direction, by studying research methodologies, learning how to set research questions, and actively working in research, on a variety of studies.
“Patients have a unique perspective, because they bring their lived experience to research work,” says Fox-Robichaud.
Dolanjski learned about the Sepsis Canada Research Training Program from Fox-Robichaud. The two met in 2017 when Dolanjski joined the HHS patient advisory council after her recovery.
“More and more, researchers want to include patient voices in their work, and this program puts me in an excellent position to contribute.” — Barbara Dolanjski, patient researcher
Fox-Robichaud recognized Dolanjski’s passion for improving the lives of sepsis survivors and recommended her for the research training program, offered for the very first time in 2022. Dolanjski’s cohort graduated in June with a certificate of completion, and was the first group to complete the program. While it’s not the only patient researcher program in Canada, there are very few.
“I never thought I would be starting this second career as a patient researcher,” says Dolanjski. “I didn’t even realize that such a role existed. Honestly, after my fourth experience with sepsis I thought I would be incredibly lucky to just get my life back and return to work teaching music.”
In fact, it was her passion for teaching, combined with her desire to educate people about sepsis and infection prevention that inspired her to train as a researcher.
More on the training program
Funded by the Canadian Institutes of Health Research, the program is free to trainees through Sepsis Canada and the Life-Threatening Illness National Group (LifTING).
It’s open to researchers, health care professionals, graduate students, postdoctoral fellows, patients and community members, with separate streams of study for medical and non-medical participants. The vast majority of participants to graduate in this first cohort have a medical background. Dolanjski, who completed the non-medical stream, was the only Ontario patient in her graduating class.
Participants were expected to spend at least three hours a week on course materials to meet program requirements.
Giving back
“Helping others has become my purpose,” says Dolanjski. “I’m happy to be alive, and because I’m an educator it really appealed to me to learn more about sepsis through research, and help others learn more about infection and sepsis prevention.”
Dolanjski plans to continue with research she started through the program. It involves a scoping review, supervised by Fox-Robichaud, of sepsis education in Canadian schools, from Grades 1 to 12. A scoping review is standardized evaluation of the available literature which can inform gaps in researchers’ knowledge, future research opportunities and policy.
The goal is to identify any gaps in education around infection control, including the dangers of sepsis, in Canadian grade schools and high schools. From what she’s found so far, there’s not a lot being taught in these areas.
“This research could lead to the development of age-appropriate sepsis education programs for schools, including a pilot study to test them,” says Fox-Robichaud, adding that it’s the perfect research project for Dolanjski because it combines her experience as an educator with her training as a researcher.
Beyond this project, Dolanjski isn’t sure what lies ahead for her as a patient researcher. But she’s confident she’ll find a place in Hamilton’s research community, when she’s not in the classroom teaching music.
“More and more, researchers want to include patient voices in their work, and this program puts me in an excellent position to contribute,” she says.
Sepsis 101
Sepsis is a life-threatening response to an infection anywhere in the body. As many as one in three people with sepsis die. Because signs and symptoms can vary and often mimic those of other illnesses, sepsis is hard to recognize, but it can be treated if caught early. To improve the chance of recovery, it’s important for individuals and health-care providers to ‘suspect sepsis’ if related symptoms appear. Sepsis affects all age groups, but some people are at a higher risk for the disease.
Signs:
Two or more of the following symptoms combined may be a sign that an infection is progressing to sepsis:
- Fever
- Hypothermia (lower than normal body temperature)
- Heart rate higher than 90 beats per minute
- Fast respiratory (breathing) rate
- Altered mental status (confusion/coma)
- Edema (swelling)
- High blood glucose without diabetes
- Decreased amount of urine
Risk factors:
- Having an infection (bacterial, fungal, viral or parasitic)
- Being very young or very old (infants and seniors)
- Having certain chronic illnesses, like cancerHaving a compromised immune system
Preventative measures:
- Keeping up-to-date on vaccinations, especially those that help prevent viral infections which may increase your risk of sepsis.
- Caring for wounds properly to prevent infection, and seeking medical attention immediately if you think a wound has become infected.
- Treating infections promptly. There are many different types of infection and several ways to treat them. If you think you may have an infection, speak with your health-care provider before your condition worsens.
- Washing your hands, especially if you or someone around you has a weakened immune system, to help prevent the spread of infectious diseases which may lead to sepsis.
To learn more about sepsis, including research training programs for medical professionals and patients, visit the Sepsis Canada website.
