Patients + Research: Andra Fawcett

Meet Andra

Andra survived a major stroke in her early 50s. She continues her progress to full mobility, but she’s also keen to help others by taking part in research. She was excited to participate in a study using the KINARM, a game-changing robotic technology used in all three Kingston academic research hospitals to assess the neurological impact of a wide range of injuries and diseases. The reams of data produced by the KINARM are used to help researchers and clinicians better understand the effects of brain injuries such as stroke.

Can you tell us a bit about your family and your family’s health story?

I had my first stroke when I was 49. It was a mini-stroke (or TIA) and I lost the use of my left arm and hand for about a month. Two years and two months later, I had a major stroke.  I was at home and I was feeling tired, nauseous, weak, and dizzy. I was stumbling and my left foot felt heavy, but light at the same time.  I realized this was not normal. My daughter-drove me to hospital. While I was waiting in the ER, I didn’t have any of the classic stroke symptoms – my face wasn’t drooping, I didn’t have trouble speaking, I never really felt anything. But when I woke up the next day, I had lost all my mobility on my left side.

I was in Kingston Health Sciences Centre’s Kingston General Hospital for two weeks and then six weeks in rehab at Providence Care. After my TIA, my stroke doctor connected me with the KINARM. It’s a robotic system that assesses how brain injuries affect our ability to move and function. After my second stroke I started doing more testing with the KINARM group. I’d go every six months or so, and I’ve done it for the last couple of years.

The KINARM collects detailed data about how the stroke has affected me, and how I’m gradually recovering. This information is valuable to researchers because I’m younger than the average stroke patient. Everyone’s stroke is different, and everyone recovers differently, so I’m hoping the information that they’re getting from me will help them better understand stroke.

Andra Fawcett Kingston Health Sciences Centre CAHO
Andra sitting in KINARM, a robotic system that assesses how brain injuries affect motor function

What does health research mean to you?

Research is how doctors are going to find new ways to prevent or treat strokes. When I was in hospital, I was a lot younger than the other stroke patients, but they were up and walking while I was staggering around like a toddler. I’m hoping that the KINARM can gather enough data from me to tell them why it takes a 50-year-old longer to recover than an 80-year-old. That’s what research is about – it can determine the hows and whys.

How can the patient voice support, improve or empower health research?

The more patients share their experiences, the more we can all learn. It’s about getting involved, because stroke patients get a lot more from people who have gone through it. I give talks at our hospitals and I use social media to share stories.

Why does health research matter to you and your family?

I’m thankful for the health care I received, because without it I wouldn’t be here today. It takes patients like me, and others, participating in research, providing feedback, it’s how we learn. It’s important to me to do what I can and give back, because that could help someone down the road. If my test results are helping in this research, I’m proud to be a part of it.

How does health research contribute to a healthier, wealthier, smarter Ontario?

Research is important and we can all do our part by taking a little bit of effort to help researchers find out the “whys”, like why do strokes happen to young people, and why does it take some of us longer to recover than others? How can we change this? You do that by getting involved.

 

Top photo by M. Manor, Kingston Health Sciences Centre; KINARM photo by Ethan Heming, BKIN Technologies

 

Related Stories

 

Ontario research hospitals, including Kingston Health Sciences Centre, make our province healthier, wealthier and smarter. Read more Patients + Research posts and share your own insights on Twitter with the hashtag #onHWS. Learn more about how hospital-based research makes Ontario healthier, wealthier and smarter.

 

 

Moving Forward on Meaningful Patient Engagement in Research

When patients and families have a place at the table, Ontario research hospitals can do a better job making our province healthier, wealthier, and smarter. As we have heard from so many patients, families, and patient advocates in our Patients + Research blog series, the patient voice plays an invaluable role in supporting, improving and empowering health research.

As part of our strategic plan, CAHO and its members are committed to driving best practices in patient and public involvement, engagement and participation in health research. To move this forward, CAHO established a Community of Practice comprising patients, caregivers and hospital staff from across our member hospitals. Collectively, this group will drive meaningful patient engagement forward by championing and implementing best practices in their own communities, and across the province.

During our recent visit to Kingston Health Sciences Centre for the grand opening of the W.J. Henderson Centre for Patient-Oriented Research, we saw many examples of meaningful patient engagement. Dr. Amer Johri, a clinician-scientist at the Kingston Health Sciences Centre and a Queen’s University professor, is one such example. Through his work on metabolic syndrome – a complex condition that includes obesity, high blood pressure, high cholesterol and diabetes – with the CINQ lab (Cardiovascular Imaging Network at Queen’s), Dr. Johri is leading the way on involving patients in the research process.

Recently, Dr. Johri and his team invited Kingston community members living with metabolic syndrome to share their experiences and, more significantly, to suggest where future research efforts should be directed.


A focus group of Kingston community members living with metabolic syndrome share their suggestions for future research.

“Hearing the patient perspective is critical to advancing research and improving care. We can enable patients who live with this condition every day to guide future research, programs and care,” said Dr. Johri. “This focus group method has had a meaningful impact on our work. That’s not only exciting for how we conduct studies within our own lab, but hopefully it can inspire other research partners to involve patients in their process and improve the quality of their studies by making modifications based on patient feedback.”

Dr. Johri’s approach is one example of the work being done across CAHO hospitals to move forward on meaningful patient engagement in research. His focus group was a collaboration between the CINQ lab and Metabolic Syndrome Canada. The CINQ Lab is funded by the Canada Foundation for Innovation and the Heart and Stroke Foundation of Canada.

Dr. Amer Johri metabolic research
Dr. Amer Johri shares his latest research on metabolic syndrome with local community members. 

Dr. Johri is one of many Kingston clinicians who will now be able to conduct research and meet with patients at the new W.J. Henderson Centre for Patient-Oriented Research, which opened on September 11, 2017. He hopes to host a yearly Metabolic Syndrome Day for Kingston community members at the new research facility.

“This new space gives us a place to host events, meet with patients and families, and talk about their experiences,” said Dr. Johri. “Patients now have a ‘home base’ for participating in research. A place that is familiar, welcoming and belongs just as much to them as it does to the researchers and hospital staff.”


Brand new space dedicated to patient-oriented research in Kingston /// Photo and feature photo: Matthew Manor, Kingston Health Sciences Centre

The new facility adds 10,000 square feet of dedicated research space to the Kingston General Health Research Institute, which is home to 700 active research projects, 273 active clinical trials, 250 researchers, 153 students and trainees, and 313 research staff.

By creating a space for partnership and collaboration among scientists, treatment teams, patients and families, this new facility will benefit the Kingston community today, while serving as a guidepost for Ontario health research tomorrow.

 

Related Stories

 

Add Your Voice

Want to share your insights on why health research matters for Ontario? Email or call Elise Bradt at ebradt@caho-hospitals.com, 416-205-1469, or direct message or tweet at us on Twitter at @CAHOhospitals.

Read more Patients + Research posts and share your own insights on Twitter with the hashtag #onHWS. To learn more about how health research makes Ontario healthier, wealthier and smarter, visit our impact page, and check out our other blog posts and videos.

Research Spotlight: Kingston Health Sciences Centre

Kingston Health Sciences researchers tackling health equity issues world-wide

Four Kingston Health Sciences Centre researchers are combining their experience with disadvantaged populations, their relationships with institutions on three continents, and a novel approach to evidence-gathering to tackle health equity issues world-wide.

ARCH, a research collaborative for global health equity, grew out of the diverse yet complementary research interests of Kingston General Health Research Institute and Queen’s University researchers Drs. Heather Aldersey (Rehabilitation Therapy), Susan Bartels (Emergency Medicine), Colleen Davison (Public Health Sciences) and Eva Purkey (Family Medicine).

“Global health isn’t just international,” explains Dr. Davison, “it’s about advantage and disadvantage, and unequal access, and working at the structural and community level on things that can benefit the vulnerable in Canada, and around the world.”

In March, the ARCH group was awarded $449,000 from the Queen Elizabeth II Scholars Program (QES) to establish The Queen Elizabeth Scholars Network for Equity in Maternal and Child Health.

“The most vulnerable mothers and children are rarely prioritized in health research or health policy, especially outside the immediate delivery and neonatal period,” Dr. Purkey says. The network aims to address the inequities in access to health services in low- and middle-income countries, where six million children die before the age of five, and where maternal death rates are still 14 times higher than in developed regions.

To do this, the project will support the research, learning and advocacy skills of 17 PhD, postdoctoral and early career researchers from the University of Kinshasa (Democratic Republic of Congo), Institute of Social work and Social Science (Haiti), the Mongolian National University of Medical Sciences (Ulaanbaatar, Mongolia), and Queen’s University (Kingston). The trainees will take part in international exchanges to conduct research and community outreach aimed at understanding and reducing disparities in maternal and child health.

“We want to develop engaged, ethical and innovative global health researchers who can advocate for these vulnerable populations, and address these real-world issues,” says Dr. Aldersey.

To build their collective experience, the group will also contribute to a common, multi-country study looking at the factors that contribute to maternal and child health inequities. This research has the potential to be boundary-breaking through its use of SenseMaker®, an innovative data-collection tool for mobile phones and tablets.

“It’s an efficient tool that enables us to get a quick picture of people’s experiences and perceptions,” says Bartels, who recently led a team using the tool to study child marriage in Syrian refugee camps across Lebanon. “It allows people to tell their stories without feeling judged or guilty, and then use the tool to interpret their stories for us without the filter of our own biases.” (Using SenseMaker, the researchers captured 1400 stories from Syrian refugees in hard-to-reach places in just eight weeks.)

Algorithms within the tool enable both qualitative and quantitative analysis of these anonymous stories, providing researchers with data patterns and contextual factors to capture common themes and identify inequities, quickly, so that researchers can go back to the communities within weeks or a few months to gain further information and begin to find solutions to these problems.

“QES is just the beginning for ARCH,” say the four researchers. “We’ll be seeking other funding opportunities to continue this kind of research.”

 

Related Stories:

 

Kingston Health Sciences Centre is one of Ontario’s 23 research hospitals that contribute to a healthier, wealthier, smarter province. Read more Research Spotlight posts on our Healthier, Wealthier, Smarter blog or join the conversation about why health research matters for Ontario on Twitter, using the hashtag #onHWS.