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

 

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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.

 

 

Patients + Research: Dr. David Gray

Economics professor Dr. David Gray took part in a clinical trial at The Ottawa Hospital to see whether an immunotherapy drug could keep his high-risk skin cancer from coming back. Four years later, he’s still cancer-free.

Dr. David Gray’s cancer was hiding in plain sight.

“It was a blemish on my cheek that just wouldn’t heal,” said the University of Ottawa economics professor and father of two. “My dermatologist didn’t like it, so he had it tested.”

When his dermatologist removed the pea-sized tumour from Dr. Gray’s face, further tests revealed that it was Stage 3c melanoma. He was at high risk of the cancer spreading to other parts of his body.

“During the initial visit, the surgeon told me that the five-year survival was below 40 per cent,” he said.

Faced with those odds, Dr. Gray decided to join a clinical trial that compared an immunotherapy drug called ipilimumab to interferon, the currently publicly-funded treatment used to keep melanoma from returning.

Ipilimumab helps the immune system attack cancer cells anywhere in the body. However, it can have serious side effects. After Dr. Gray’s fourth treatment, his hormonal (endocrine) system went into crisis, and he was hospitalized for four days. He continues to take hormone replacement medication today.

These kinds of side effects have motivated researchers to look for more effective and safer options, said his oncologist at The Ottawa Hospital, Dr. Xinni Song.

“Physicians treating melanoma are looking for something better to keep the cancer from coming back,” said Dr. Song, who is also an assistant professor at the University of Ottawa. “Our patients are very keen to take part in clinical trials, which can not only help them, but future patients as well.”

Four years after taking part in the trial, Dr. Gray is still cancer-free. The results of the trial are still to be published.

“You can’t attribute my survival 100 per cent to the treatment. But my wife certainly does,” said Dr. Gray.

“For me, it was very meaningful that he can enjoy his life with his family and go back to work and continue to teach,” said Dr. Song. “He’s remained cancer-free, and the hope is that he is cured from the disease.”

To spot melanoma early, Dr. Song recommended that you tell your doctor if you notice any changes in your skin, such as new spots or marks that grow or change in colour.

The Ottawa Hospital is a major centre for cancer immunotherapy clinical trials. Researchers at the hospital are also developing new kinds of immunotherapy, such as cancer-fighting viruses and genetically-engineered immune cells. Dr. Gray’s story was originally published on The Ottawa Hospital website.

 

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Ontario research hospitals, including The Ottawa Hospital, 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.

Patients + Research: Pamela Parker

Research and care at Canada’s first cardio-rheumatology clinic

Meet Pamela

Two years ago, Pamela Parker’s hands became cracked and sore, and she learned she had developed severe psoriasis and eczema.

Pamela Parker Women's College Hospital

After seeing a specialist, she learned the psoriasis was also in her joints, a condition known as psoriatic arthritis. She was referred to Dr. Lihi Eder, a rheumatologist and a scientist at Women’s College Hospital (WCH) who runs the psoriatic arthritis program at WCH. After sharing her family’s history of heart disease, Dr. Eder referred Pamela to the WCH cardio-rheumatology clinic, the first of its kind in Canada.

Research has shown that patients with rheumatic conditions, such as psoriatic arthritis and rheumatoid arthritis, are at a higher risk for heart disease and other cardiovascular complications. The new clinic is helping patients like Pamela manage their heart health, and ideally, prevent a serious cardiac event. Dr. Eder and Dr. Paula Harvey, the head of cardiology at WCH, jointly run the clinic and collaborate on research studies about the connections between joint health and heart health.

Pamela shared why she is grateful for her care and why she gives back by participating in research.

Could you tell us about your health story?

All of a sudden, it was May 2015, when my skin just went berserk and my joints just went berserk. I was getting married as well, and you are focused on your nails and hands. I thought — why would my hands go from normal to this, and my joints? That’s when I was referred to Dr. Eder. She is very thorough and very caring. She actually takes her time out of her day to call me personally, which does not usually happen with specialists. I found out I do have psoriatic arthritis on top of psoriasis and eczema. She said we need to treat this aggressively or I could end up being crippled.

How were you referred to the cardio-rheumatology clinic?

Dr. Eder said there was a correlation between psoriatic arthritis and heart disease. She asked if I had a family history. I do, my father passed away of a massive coronary and my sister has had a triple bypass. I was referred to the cardio-rheumatology clinic and they did tests, and I have elevated cholesterol, nothing major at this point. For me, it was so amazing to have access to a cardiologist at a stage where if there is an issue they will be on top of it, knowing my family history. Dr. Eder then asked if I wanted to join a combined study and I was happy to participate in their research.

Why did you decide to participate in research?

It is so important. Participating is minor compared to having a crippling disease that no one knows anything about. My kids, my grandkids, my great grandkids could end up with these conditions, and if studies could figure out the ins and outs and shortcuts to detect issues early, I am all for it!

 

Approximately 30% of the people with psoriasis will develop an inflammatory arthritis known as psoriatic arthritis. Learn more about the psoriatic arthritis rapid access clinic at Women’s College Hospital and discover patient resources.

 

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Add Your Voice

Want to add your voice to the Patients + Research blog series? Email or call Elise Johnson at ejohnson@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.

Patients + Research: Annette McKinnon

At 32 I was a mom to two boys and working part time. When I started to have problems with my hands, feet and overall exhaustion, of course I went to see my doctor. He kept telling me I was just a normal busy mom. This caused a delay of more than a year before I got a diagnosis of Rheumatoid Arthritis. By then my joints had a lot of damage. It was hard for me and for my family to accept this new ‘normal’ in our lives.

Patient Advocate Annette McKinnonOften chronic disease makes people feel depressed and I was no exception, but between my determined physio and a clinical trial of a new drug that my doctor suggested, I was able to reach a turning point.  The positive feedback I got from one of the trial doctors made me realize that even with health problems I could change my life through my own actions.

That encouragement led me to try to find and use research papers from PubMed and to share what I learned about RA in private health groups and on Twitter.  A friend called it evidence-based tweeting.

Through these efforts I attended an IDEO design thinking workshop. Every patient was partnered with a group of Health Care Professionals and we spent a day of developing a prototype solution for a patient issue – mine was communication between doctor and patient. We created very effective solutions and I thought my team was brilliant. It wasn’t till the next day that I credited myself with having been a team member too.

Because of this conviction of the value of patient knowledge and the patient voice I have persisted in trying to be a patient who is involved in many aspects of the health system.

The first time I was involved in research, as a patient member on a research team, I thought I was helping out, and ended up as a co-author.

Since then I have been on research teams in Ontario applying for grants and also in doing the work after funding. It takes a lot of effort on both sides. The patient voice in research is especially necessary – I had found it shocking in the past to find doctors and researchers used to be the only ones who had input into which results were important to research, rather than finding out what was important to patients.

It has taken a long time for me to become a partner in research, rather than a subject who is being studied. This would have been impossible even ten years ago. I’m so pleased that at last the culture of health care is moving towards the inclusion of patients in meaningful ways.

Anyone who is an active patient will tell you that it is almost always done on a volunteer basis, but being involved has definitely made me healthier, and that’s worth more than money.

 

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Add Your Voice

Want to add your voice to the Patients + Research blog series? 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.

Patients + Research: Joan Baillie

Meet Joan

Three years ago, Joan Baillie was diagnosed with Mild Cognitive Impairment (a condition that is likely to develop into dementia). She participated in a brain rehabilitation research study at Baycrest Health Sciences led by Rotman Research Institute senior scientist, Dr. Brian Levine, and learned strategies to improve focus and complete everyday tasks through his Goal Management Training intervention. Since her diagnosis, Joan continues to function well and enjoy life.

Joan Baillie Baycrest Research Toronto

Can you tell us a bit about yourself and your health story?

More than 20 years ago, I had a mini stroke (also known as a Transient Ischemic Attack (TIA), a condition when the brain’s blood flow is temporarily blocked) and made a full recovery. After I left my car running with the keys inside for two hours, I visited my family doctor about memory concerns. My doctor diagnosed me with Mild Cognitive Impairment and while researching the condition, I read that it could lead to dementia.

A year after my diagnosis, I saw an advertisement about a research study taking place at Baycrest. They were looking for people who experienced a mini stroke or TIA and could benefit from cognitive rehabilitation. I was accepted into the study which would help doctors learn more about the brain and the cognitive changes that may occur with a stroke or mini strokes. The hope is that this will help doctors learn how to best treat those with cognitive problems. This research helped me better understand my memory problems and handle changes that are taking place in my brain.

Short-term memory loss always remains a concern and I am very aware of the signs of dementia.

Why does health research matter to you?

The more the doctors know, the more they can do for you. It’s important that doctors have more knowledge because we are an aging population that is living longer.

The brain scans taken at the start of the study showed that I might have experienced many mini strokes which potentially led to my memory loss. With Dr. Brian Levine’s Goal Management Training, I learned many strategies to help with focus and memory and these allow me to live my life more productively.

How does health research contribute to a healthier Ontario?

I believe without health research we would still be contracting polio, dying from diabetes and not living our lives fully due to brain limitations. Every advance in medicine is the result of research. If research can help find a reliable treatment for those suffering from dementia and/or Alzheimer’s, or even help everyone live their lives to the fullest, then it is absolutely necessary for this research to take place.

The knowledge that is gained from health research will contribute to the future care and treatment of patients with similar problems. It will help medical professionals look after their patients in more productive and understanding ways. It will ultimately save the government many dollars as they will better understand what is needed to serve people who live with dementia or similar conditions. We are approaching a crisis stage because hospitals, nursing homes and the general public are struggling to accommodate those who are living with these diseases.

How can patients and families support, improve or empower health research?

The public should understand that it research is necessary if there is going to be any improvement in the care of people in the future. People should make themselves available for research in any area for which they are experiencing issues. It takes some of your time, but the results will benefit so many patients with dementia or Alzheimer’s. When I told people I was involved in a research study, they congratulated me for doing something positive. We can all do that by sharing our experiences and encouraging other people to become involved in research projects.

 

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Add Your Voice

Want to add your voice to the Patients + Research blog series? 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.

Patients + Research: Paulette Lalancette

Meet Paulette

As a Respiratory Therapist and Anesthesia Assistant, Paulette has experience with healthcare in Ontario. But her world changed when she was diagnosed with cancer. Now eleven years later with a bright and hopeful future ahead, Paulette has become a health research champion as the co-chair of the Northeast Cancer Centre Patient and Family Advisory Council at Health Sciences North in Sudbury.

Paulette Lalancette shares her struggle with cancer and the value of health research at Health Sciences North

Can you tell us a bit about yourself and your health story?

I worked in the healthcare system every day. I was a Respiratory Therapist and Anesthesia Assistant living in Toronto. While working with a Plastic Surgeon at the hospital, my arm began to bleed out. It was decided that a closer look would be necessary. It was confirmed that I had stage 3c Malignant Melanoma. It wasn’t diagnosed early on because it wasn’t a typical melanoma. It was amelanotic, meaning it was white instead of the typical black spot.

Once it progressed to stage 4, I was sent to Roswell Park Cancer centre in Buffalo, NY for Interleukin (IL-2) therapy. The Oncologist there explained to me that he believed the future of fighting cancer didn’t necessitate finding a cure but finding treatment to help people to live with cancer as a chronic disease. Research was the key. After two rounds of treatment new tumors continued to appear. I was told the treatment wasn’t working. Back in 2009, there were no other treatment options and so the decision was made to provide comfort measures. I was told that there were new therapies in research trials but nothing would likely be available for me in time.

The following months were expected to be difficult, but for inexplicable reasons the tumours receded. By 2012 it was declared that there was no longer evidence of disease. There is no explanation as to why the melanoma disappeared. My Oncologist was not convinced that it is related to the Interleukin treatment but for whatever reasons it has been eleven years and I am still here to tell my story, leading a healthy lifestyle and able to enjoy the experience of my child growing up.

Why does health research matter to you?

Research is important to me because in the end it gives me hope that I will meet my grandchildren one day. My son was four years old when I was diagnosed with cancer and he is now fifteen. I live with the reality that my cancer will likely return one day. I am hopeful for the research advancements that have and will provide new treatment options with fewer side effects as the day comes that I may need them.

How does health research contribute to a healthier Ontario?

I believe health research has a two-fold contribution.

First, it contributes to disease prevention and wellness promotion. Research helps understand what is causing diseases and ill health and what steps can be taken to avoid triggers. In general, people want to engage in activities that will prevent disease. Research provides the necessary evidence-based data to make concrete recommendations to help the population avoid ill health and achieve wellness without having to decipher fact from fiction on their own.

Second, if disease cannot be prevented, health research can help improve outcomes, safety and patient experience. Research allows us to move forward with the proper care based on carefully weighted evidence. Patients can be confident that leading edge health care is being provided across the province because of health research.

How can patients and families support, improve or empower health research?

Adding the patient voice and a face to research can provide a sense of pride to the researcher and to its many supporters. Showing the human face of research gives all involved a motivation to continue the support needed to keep health research moving forward. Researchers do not always have the opportunity to see the monumental impact that some of the smallest advancements make. Also, patients do not always have the opportunity to say thank you to a research team for enhancing their daily lives. Continued health research gives me peace of mind for the future.

 

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Add Your Voice

Want to add your voice to the Patients + Research blog series? 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.

Patients + Research: Wayne Kristoff

I was diagnosed in June 2014 with Type 2 diabetes.  It was bothersome but not unexpected as I had been told by my family doctor that I was borderline diabetic for a while. My father was also Type 2 and my paternal grandmother had what was described as a “sugar problem” in the late 40’s and early 50’s.  From what has been discussed in our family, I believe that it would be called Type 2 today. At the time of my diagnosis, I was told that I would be on medication for the rest of my life.

Fast forward to mid-December 2015 and I was watching the news on CTV London when a story appeared on an upcoming Lawson Health Research Institute trial taking place at St. Joseph’s Health Care London to see if they could put Type 2 diabetes into remission for a period of time. I would do anything to make things better for my children and grandchildren and there was the possibility of managing my diabetes in another way. Also, with my background in education, I knew the value of research into finding better ways to do things.

Wayne Kristoff participated in a clinical trial at Lawson Health Research Institute for Type 2 diabetes remission

In early February 2016, I was asked to meet so that information could be gathered, expectations outlined, and generally discuss if the study was appropriate for me. Some of the expectations were that I would meet with a dietician, I would keep track of my weekly activity and steps, I would work at losing a minimum of 5% of my body weight, and I would follow the regimen to the best of my ability. I was quite eager to join the study so another appointment was established where I would have blood taken, have a check-up and be randomized, which was explained to me as whether I would be part of the control group or part of the test group.

At the next appointment, everything went well. For the next month I would have weekly visits to the clinic with telephone checks part way through the week. From late March until May, I would attend the clinic every two weeks with all the paper work completed such as a 3-day meal diary, food survey of things I ate over a year, steps, daily insulin dosage and blood testing. I have to say that the visits were a pleasure as they turned into both cheerleading and counselling.

When I went for the checkup in May, it was the end of the intensive drug therapy and I was told to start decreasing the dosage of insulin. Blood was taken for another A1C test and I was to receive a call when the results were back. I remember well where I was and what I was doing when I received the call on May 16 to tell me that the test was good and to stop all diabetic medication.

Wayne Kristoff participated in a clinical trial at Lawson Health Research Institute for Type 2 diabetes remission
Wayne shared his story at our Healthier, Wealthier, Smarter London Field Trip

Whatever the outcome in the future, I have had much more time drug-free than I ever expected when I was first diagnosed. At the end of the trial, I am still not taking diabetic medication and my family doctor will continue to monitor my progress. I am now aware that there are several options for me if and when I need to take medications again. I also have to say that my quality of life is greatly improved.  I have so much more energy than I had before the trial. Not feeling well almost constantly puts a damper on things that you want to do. In the course of this trial I have met some great people that I know are there to support me.

Research such as this at our hospitals is so important because it advances treatment options for patients. It gives the public a chance to see where money goes rather than just in some lab out of sight.  It puts every day faces on research.

In summing up, I feel very privileged to be part of this trial. I would encourage anyone who sees a trial that is appropriate for them to become involved.  Would I do it again?  In a heartbeat and I will certainly be looking for other ways to stay involved.

Read more about Wayne Kristoff and the REMIT study at Lawson Health Research Institute

 

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Add Your Voice

Want to add your voice to the Patients + Research blog series? 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.

Patients + Research: Francine Mault

(French version follows)

Involving patient partners in research

At Montfort, patient partners are involved in research to improve training for the next generation of healthcare professionals.

Simulation-based learning offers many benefits. Health professionals, medical students, residents and members of other health professions can use it to expand their knowledge through clinical immersion, the use of medical robots, virtual reality or large-scale simulation. How can this learning model be made even more effective and realistic for participants?

Michelle Lalonde is an assistant professor at the University of Ottawa’s School of Nursing and a researcher with the Institut du Savoir Montfort (ISM), a knowledge institute affiliated with Montfort, Ontario’s francophone academic hospital. Professor Lalonde recently added a new component under a research project on simulation-based learning for student nurse training: the patient partner.

As lead investigator for this project, she wanted to see whether incorporating a patient partner into a team that already included medical students and health care professionals would have any impact on the learning process of student nurses.

Francine Mault, patient partner at Montfort since 2015, took part in a simulation session.

“I was asked to get involved in a project to assist nurses who are in training in the Montfort simulation lab,” explained Ms. Mault. “The lab delivers practical training to simulate real-life situations. I think my contribution has enabled the research arm of the ISM knowledge institute to improve the way that the next generation of healthcare professionals is trained.”

The results show that students appreciated the realism created by the participation of the patient partner and health professionals.

“The important thing is that this training is based on input from people like me, who have had the experience of being a patient,” added Ms. Mault.




Engager les patients partenaires dans la recherche

À Montfort, les patients partenaires participent à de la recherche en vue d’améliorer la formation de la prochaine génération de professionnels de la santé.

L’apprentissage par simulation offre de nombreux avantages. Les professionnels de la santé, ainsi que les étudiants et les résidents en médecine et d’autres professions du domaine de la santé, peuvent y perfectionner leurs connaissances grâce à l’immersion clinique, l’utilisation d’androïdes, la réalité virtuelle ou la simulation à grande échelle. Comment rendre ce modèle d’apprentissage encore plus efficace et réaliste pour les participants?

Mme Michelle Lalonde est professeure adjointe à l’École des sciences infirmières de l’Université d’Ottawa et chercheuse à l’Institut du Savoir Montfort, un institut hospitalier rattaché à Montfort, l’hôpital universitaire francophone de l’Ontario. Dans le cadre d’un projet de recherche sur l’apprentissage par simulation pour la formation des étudiants en sciences infirmières, Professeure Lalonde a ajouté une nouvelle composante : un patient partenaire.

La chercheuse principale pour ce projet voulait voir si l’intégration d’un patient partenaire dans une équipe regroupant déjà des étudiants et des professionnels de la santé aurait un effet sur l’apprentissage des étudiants en sciences infirmières.

Mme Francine Mault, patiente partenaire à Montfort depuis 2015, a participé à une séance de simulation.

« On m’a demandé de m’impliquer dans un projet pour assister des infirmières qui sont en formation dans le laboratoire de simulation de l’Hôpital Montfort », explique Mme Mault. « Dans ce laboratoire, on donne des formations pratiques comme si c’était la réalité. Je pense que ma contribution a permis à l’Institut du Savoir Montfort – Recherche d’améliorer la façon dont on formera la prochaine génération des professionnels de la santé. »

Les résultats ont démontré que les étudiants ont apprécié le réalisme offert par la participation du patient partenaire et les professionnels de la santé.

« Ce qui est important, c’est que cette formation s’appuie sur des témoignages de personnes comme moi, qui ont vécu l’expérience d’être patient », ajoute Mme Mault.

 

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Add Your Voice

Want to add your voice to the Patients + Research blog series? 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.

Patients + Research: Gretta Hutton

Meet Gretta

While parked at the local Home Depot, Gretta Hutton received her diagnosis over the phone: it was Mantle Cell Lymphoma, she had 2 – 5 years to live, and there was no treatment offered beyond the standard of care treatment. After weeks of feeling hopeless, Gretta found a clinical trial at Hamilton Health Sciences led by Dr. Tom Kouroukis. A year later, Gretta’s cancer was in full remission.

Gretta Hutton at CAHO healthier wealthier smarter conference
Gretta shares her insights at the 2015 Healthier, Wealthier, Smarter conference.

Can you tell us a bit about yourself and your health story?

By day, I am a social worker in the health sector, counselling clients who are struggling with critial illnesses. In 2014, I began to feel ill myself and went to see my doctor for some tests. Driving home from work one evening, I received a call from my internist wanting to share the results. He asked that I pull over so I drove into the parking lot of my local Home Depot where he then gave the diagnosis: stage 4 Mantle Cell Lymphoma. A subsequent meeting with a local oncologist revealed that I had 2 – 5 years to live. More than that, I wasn’t given any alternative treatment beyond the standard of care, RCHOP, that might  help me beat my cancer. But thanks to the persistence of my friend and my sister, I discovered a clinical trial led by Dr. Tom Kouroukis at the Juravinski Cancer Centre at Hamilton Health Sciences (HHS). The care that I am receiving in that trial is outstanding. Dr. Kouroukis listened to me, not just as a patient, but as a person, and walked me through the science of the trial and my care plan.

Why does health research matter to you?

If you asked me two years ago whether I thought I’d be back at work and able to resume my normal activities, I don’t think I would have believed you. This place, and the research here, has saved my life.

I was very ill at the beginning of the research study—sleeping a lot, exhausted—but that started easing up within the first two months. After 12 weeks, I was feeling “normal”. When I didn’t dare to hope that I would beat my cancer, the research team was there, bringing my hope to life with the data and the results from the study. Now here I am, and I have my life back.

Health research, and the clinical trials that result from it, are really important because they offer patients a different path. Having options, especially when you’re ill, is really important.

How does health research contribute to a healthier Ontario?

Clinical trials don’t exist in a vacuum; they are the results of a whole body of scientific study. They move research discoveries into new and better therapies for patients like me. Without health research, you can’t have clinical trials, and without clinical trials, you can’t improve the health of Ontarians.

How can patients and families support, improve or empower health research?

One of the hesitations that people might have in participating in clinical trials is the safety aspect of it. The best people to help reduce fear, hesitation or, in some cases, stigma are the people who have gone through clinical trials. Those of us who have thought through the risks and the benefits, who have worked with the researchers and staff, and who have come out on the other side with renewed hope—we are the ones who need to share our stories with the public and be strong champions for health research.

Patients and the public also have an important opportunity to voice their health research needs to decision makers. If there are life-saving clinical trials and medicines available, then patients should be aware and have access to them. In my role as Ontario Lay Representative on the Canadian Cancer Clinical Trials Network since November 2015, I am working hard to ensure that that conversation takes place at the point of diagnosis for every patient with cancer or other serious illness even if their local hospital is not a research hospital in a major urban centre. Where you live should not be the determining factor in being offered access to research.

Our health system, including research and clinical trials, is a public system, and so the public itself can be a voice of change.

 

 

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Add Your Voice

Want to add your voice to the Patients + Research blog series? 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.

 

Patients + Research: Becky Hollingsworth

Meet Becky

Shortly after receiving an asthma diagnosis, retired nurse Becky Hollingsworth joined a clinical trial at The Ottawa Hospital, which found that Becky—and 33% of adults diagnosed with asthma—did not have the condition.

Patient engagement in research Ottawa Hospital asthma clinical trial

Can you tell us a bit about yourself and your health story?

A couple years ago, my two pre-school aged grandchildren shared their colds with me. Although they recovered quickly, I wound up in the hospital with pneumonia. After I recovered from pneumonia, I continued to have a cough, wheezing, and shortness of breath. My family physician diagnosed me with asthma and prescribed both oral and inhaled medication. Her diagnosis was based on my history and current symptoms. Shortly after the diagnosis, I received an invitation to join a clinical trial for people recently diagnosed with asthma that was being run by Dr. Shawn Aaron, senior scientist and respirologist at The Ottawa Hospital and professor at the University of Ottawa. I eagerly accepted the invitation, as I am a great believer in clinical trials. During the clinical trial, it was determined that 33 percent of adults diagnosed with asthma do not, in fact, have it. I was one of those people. My lungs just needed more time to heal from the pneumonia.

Why does health research matter to you?

Without health research, doctors are “shooting in the dark” when diagnosing and prescribing. Without information from clinical trials, it is possible people will be given treatments that do not work and may be harmful. I am a retired nurse, and perhaps have a bias toward science when it comes to practicing medicine. One needs a correct diagnosis in order to determine the correct treatment. Because my physician thought I had asthma, she prescribed both oral and inhaled medication, which I could expect to have to take for the rest of my life.

No one wants to have a chronic illness. It has implications for several aspects of a person’s life, including the negative side effects of drugs, increased pharmacy expense (for the patient and/or the government) and limitations on travel. A misdiagnosis is even more distressing, as one is exposed to the issues mentioned above and the real medical problem, should there be one, can go undetected, and therefore untreated, and potentially lead to a medical crisis.

How does health research contribute to a healthier Ontario?

Without research, we are doomed to continue the same old practices. We want our health care to evolve. We want to know if accurate diagnoses are being made. We need to know if treatments work or if there are better treatments. We need to know the ramifications of treatments: are they more or less effective than other treatments, do they have a negative impact on a person’s quality of life, are they safe? Through research, we move forward.

How can patients and families support, improve or empower health research?

The results of Dr. Aaron’s asthma research left me thinking about the opportunities for educating both the general public and health professionals. The results were dramatic and received a great deal of publicity. Those of us involved in the media coverage made a point to talk about spirometry testing. Like a blood test to corroborate suspicion of diabetes, spirometry is a relatively simple way to measure lung capacity and volume. It gives important pulmonary function information that is of great benefit when diagnosing and treating people with conditions that affect breathing.

I live in a small community and have a high profile due to my past career, volunteer work, and my husband’s visibility. Everywhere I go, someone stops to tell me that they saw me on TV or heard me on the radio. They all have a story to tell about themselves, a friend, or a family member who has been diagnosed with asthma. After hearing that over 33 percent of adults diagnosed with asthma do not have it, they want to know if they or their friends or family should ask their doctors for spirometry testing. I encourage them to do so.

 

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Add Your Voice

Want to add your voice to the Patients + Research blog series? 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.