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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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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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.

Patients + Research: Nicole Brady

Meet Nicole

Nicole Brady, a pediatric nurse at The Hospital for Sick Children, had her first baby in 2009. About six weeks after her son was born, she began to develop anxiety, insomnia and intrusive negative thoughts about herself and the baby — symptoms of postpartum depression.

Women’s College Hospital’s (WCH) family practice team referred her to the Reproductive Life Stages Program, led by Dr. Simone Vigod, a psychiatrist and scientist at WCH.

Nicole is not alone. Depression is one of the most common complications postpartum, with rates estimated from 6.5 to 12.9 per cent. Untreated postpartum depression affects the health of mothers and their families. But studies suggest the condition is underdiagnosed and undertreated.

Nicole received treatment and support through two more pregnancies at WCH. She has participated in research, including a study led by Dr. Vigod to develop a patient-decision aid to help women decide if they should take anti-depressants during pregnancy. Nicole shared her experience of treatment and recovery.

nicole-brady

Can you tell us about your health story?

I started seeing Dr. Danielle Martin with my first pregnancy. After he was born, I ended up starting to develop some symptoms of post-partum depression around the six-week mark, and Dr. Martin helped me through that. Eventually, she ended up referring me to the Reproductive Life Stages Program at WCH and I started seeing Dr. Vigod, who was really fantastic. The first year my depression was quite severe. I also attended a group program.

When things were better, I pulled back a little bit. Then I got pregnant again with my second baby, and I ended up seeing Dr. Vigod again. She followed me throughout that pregnancy and then afterward too. I did have some postpartum depression symptoms that time but it was much better. I ended up seeing Dr. Vigod for a shorter period of time, and then I had my third baby.  She followed me a little, but I was great with that pregnancy and postpartum.

Did your experience as a nurse make it easier for you to recognize symptoms and seek care?

I always wonder that. Partially, but I think it also made me a bit more resistant in a way, that I felt like I should be able to handle it on my own. That I have this knowledge base, and I am a pediatric nurse, so I know how to take care of children. But when I realized things were really going downhill, I knew we needed to take care of this right now. I also know how to access things within the healthcare system.

What made you decide to participate in research?

For one I’m a nurse myself, so I value research very much. I wanted to take a medication that was compatible with breast-feeding, and Dr. Vigod helped me decide what would work best for me. She really brought the newest research to my attention and was very respectful, knowing my background and knowing the information that I needed to feel comfortable with it. Research is constantly evolving. We have new information and that can help us make the best-informed decision possible.

Why is the patient voice important to health research?

I think the patient voice is important because every patient has different needs. Every patient is coming from their experience — from a different perspective. There isn’t a one size fits all solution to everything. For me, my patient experience was very much dictated by my healthcare background and having that knowledge. The great part of my experience with Dr. Vigod was that she could tailor what I needed based on my knowledge and my experience.

 

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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: John Howse

Meet John

A few years ago, John Howse was diagnosed with Type 2 Diabetes. After hearing about a clinical trial at Mount Sinai Hospital for short-term insulin therapy, John decided to get involved in research.

jhowse-photo-1
John Howse has been a Firefighter for 31 years.

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

I am a career Firefighter with 31 years of service.  I was recovering from an injury a few years ago.  At that time I was also diagnosed with Type 2 Diabetes.  It was shortly after the diagnosis that I saw an interview on the evening news about a research study at Mount Sinai Hospital which intrigued me.  It was investigating the possibility of inducing a remission using insulin for 3-4 weeks at time – called short-term insulin therapy. Participating in the trial was the one thing I could do while recovering and I felt the need to contribute to answering just another question researchers were asking.

Does health research matter to you?

Absolutely.  It should matter to everyone.  Most people don’t think about it until it impacts them in some way.  I am no different.  I’ve donated both my time and money in the past when people I’m close to become ill. Suddenly illness has become my personal focus.

How does health research contribute to a healthier Ontario?

I believe that there is a better chance of encouraging participation in clinical trials if the research is done in our own backyard. Ontarians are rightly proud of medical breakthroughs and there is an opportunity to bring more awareness to the cause by celebrating our successes publicly.  I think that Ontario should lead whenever possible and reap the benefits of discoveries.

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

Personal stories are always the most powerful.  The stories that impact me the most are from the people experiencing tragedy, losing hope, turning to some leading edge research or procedure and recovering.  Patients have the power to encourage researchers to carry on even in the face of failure.

Read more about John’s story on the Mount Sinai Hospital website.

Related Stories

 

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: Richard King

Meet Richard

Richard is one of hundreds of patient volunteers who have taken part in respiratory studies over the past 25 years with Dr. Denis O’Donnell, a world renowned researcher in Chronic Obstructive Pulmonary Disease (COPD) at Kingston General Hospital.

 Richard is one of hundreds of patient volunteers who have taken part in respiratory studies over the past 25 years with Dr. Denis O’Donnell, a world renowned researcher in Chronic Obstructive Pulmonary Disease (COPD) at Kingston General Hospital
Rick King at work in the dental lab he has managed for more than 45 years.
Photo: Matthew Manor (Kingston General Hospital)

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

I’m 70 years old and I’ve had lung disorders since I was three. It started as asthma, but now it’s Chronic Obstructive Pulmonary Disorder (COPD), which was diagnosed in 1994. I’ve been under the care of a respirologist since the early 1970s. I’ve gone through different levels of this disease, and it’s gotten worse over time. The problem is, air gets trapped in your lungs and it can’t get out, making it difficult to get new air in.

I’ve been under the care of Dr. Denis O’Donnell at Kingston General Hospital for the past two decades, and I’ve taken part in a number of his studies. He really has revolutionized my life. I’ve been part of a study to try out new inhalers with a new delivery system.

Dr. O’Donnell is a very kind and caring physician, always trying to read behind the lines, trying to find out why things happen. I’ve gone through seven decades of breathing disorders, and now I’m at a point where although I have limitations in my ability to perform physical activities, I still strive to live a normal life. The breathlessness is always with me but I have found that by pushing myself and exercising faithfully (which takes dedication) I can do almost do whatever I want!

Why does health research matter to you?

My belief has always been, we should give back. It’s why I’ve given my time to assist in research. Research matters to me because if there wasn’t research going on, there’d be no drug development, and a lot of people wouldn’t have the quality of life that we have now.

When I was little, many times I’d have to sleep upright in a rocking chair because I couldn’t breathe. Nowadays inhalers give your lungs an opportunity to open up your airways. You’re able to go for a walk or live a relatively normal life. When I see a doctor bending over backwards to find answers to benefit his patients, I recognize that are a lot of positives for us, and it’s our responsibility to help them answer the questions that lead to better treatments and better quality of life.

How does health research contribute to a healthier Ontario?

Research has helped me to have a better quality of life – I’m still going into the dental lab (which I managed for more than 45 years) three days a week as I move toward retirement– but it also helps the lives of all the people in Ontario. And it helps people around the world, so the impact of this Ontario-based research is global.

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

Without the patient volunteers, doctors wouldn’t be able to do the research, so the patient voice is important. The problem is, there’s not a lot of public knowledge about respiratory disease. For example, people with my problem, as long as we’re sitting still, nobody knows we have a problem. But as soon as we become active it’s an issue. You should be able to do all those kinds of things, walking, going up and down stairs, playing football with your grandson… you should be able to enjoy all aspects of life. That’s what the miraculous new drugs are doing for us. So it’s important for patients to give their time to research. It IS our responsibility!

 

Related Stories

 

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

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.