SPOR: Bringing real change to health care

The Strategy for Patient-Oriented Research at work: Helping patients access the right treatment at the right time

February 11, 2016

Ms. Béatrice Débarges

Through its Strategy for Patient-Oriented Research (SPOR) initiative, CIHR engages patients, physicians and other partners in an integrated approach to health care with the ultimate goal of improving health outcomes.

SPOR also recognizes that the knowledge acquired by a patient living with a particular disease or condition can be as valuable as the scientific knowledge acquired by clinicians and researchers through their work and training.  

As someone with experience in both roles, Ms. Béatrice Débarges is leading an engaging dual narrative and shares her personal experience as both a researcher and patient who is living with the chronic condition: fibromyalgia.

Audio – Interview with Ms. Béatrice Débarges (in French only)

Transcript

This is David Coulombe with the CIHR Health Research in Action news. Involving patients in health research is a central element of CIHR's Strategy for Patient-Oriented Research.

Here today to share her experience with health research is Dr. Béatrice Débarges, who was diagnosed with fibromyalgia herself 11 years ago. Since then, she has become a researcher and an expert on fibromyalgia, while participating in her own care as a fibromyalgia patient. She has also become a life coach and a source of inspiration for many other people who have this disease.

Mr. David Coulombe: Béatrice, hello.

Ms. Béatrice Débarges: Hello, David.

Mr. David Coulombe: So, first of all, can you tell us about your own health problems?

Ms. Béatrice Débarges: Well, ever since 1998, I have been living with chronic pain. It took six years of medical exams before I finally received my diagnosis: I have fibromyalgia along with irritable bowel syndrome.

To give you some background, the main symptoms of fibromyalgia are diffuse muscle pain, chronic fatigue, and sleep disturbances, but other symptoms include irritable bowel syndrome, headaches, pelvic pain, low blood pressure, anxiety, and also a form of cognitive dysfunction known as "fibro fog". Some people with fibromyalgia also experience depression, but I'm not one of them. Anyway, by 2010, my life had come down to almost nothing but pain everywhere in my body, fatigue, and fibro fog, without a break, 24 hours a day, despite my medication.

Now I'm 39 years old. I'm a proactive patient. I've made some drastic changes in my personal and professional life, and my quality of life has improved a lot. But despite everything, the disease is still there, hanging over my head like a sword of Damocles.

Mr. David Coulombe: And what's interesting is that you decided to do research on your disease yourself.

Ms. Béatrice Débarges: Yes, but actually it was a combination of circumstances, because in 2010, I was finishing a master's in fundamental research. I was studying the stress axis, but I didn't see any real meaning in what I was doing. I felt powerless and useless, and I wanted to do some kind of health research that was closer to the patients.

At the time, my disease was taking up more and more of my life. Then I met Professor Serge Marchand at a fibromyalgia conference. I told him about my hypotheses about the connections among fibromyalgia, the stress axis, the autonomic nervous system, and especially sleep. And he said to me, "Write me up a proposal for a project, and if I'm convinced, come do a doctorate with us." And that's how I ended up joining his team in April 2010.

By the time I took my pre-doctoral exam, my health had deteriorated, and I had to interrupt my research, so in a sense, I had validated my own hypotheses. But I had no intention of giving up, because by then, I was really on a mission, and my primary goal was to help other patients. So I switched from the doctoral program to a master's in clinical science, and obtained that degree in January 2014. In fact, looking back, I realize that unconsciously, I had already begun to promote patient involvement in research, through my own contribution as what is sometimes called a patient-researcher and through my study of my own pathology.

Mr. David Coulombe: And that leads right to my next question: what do you think of the Canada's Strategy for Patient-Oriented Research that CIHR has developed with partners?

Ms. Béatrice Débarges: I think that this strategy is essential to address the new reality of an aging population. Also, half of all people in Western countries have at least one chronic disease, and 50 to 80 per cent of these patients are not taking or have stopped taking their prescription medications. Another important fact to note is that it is more complex and more expensive for a society to manage chronic diseases than acute ones.

So I think that we have to remain vigilant and have a well-defined framework, such as this strategy, to protect patients and make sure that they are not exploited for research purposes. We must always remember that they are still people, and people who are more vulnerable precisely because of their health conditions.

Another important need, which the Strategy for Patient-Oriented Research meets, is to recognize the experiential knowledge that patients acquire about their diseases from living with them, on an equal footing with the scientific knowledge that clinicians and researchers obtain through their work, and to build on both kinds of knowledge in a genuinely collaborative way. So I think that we have to encourage this strategy and invest all of the necessary human and financial resources to support it.

Mr. David Coulombe: Very interesting, Béatrice. Thank you so much for being with us today.

Ms. Béatrice Débarges: My pleasure. Thank you, David!


Dr. Antoine Boivin

Photo courtesy of University of Montreal.

Dr. Antoine Boivin is an adjunct professor at the University of Montreal and a clinician-researcher with the University of Montreal's hospital research centre.

Dr. Boivin was struck by the gap between the research community's goals and objectives and the day-to-day, practical needs expressed by patients. Seeing an opportunity for improvement, he decided to get involved, convinced that he could make a difference.

And he was right!

As a proponent of the Strategy for Patient-Oriented Research (SPOR), a CIHR-funded patient-centred initiative, Dr. Boivin has brought together members of the research community, clinicians, patients and the community-at-large – as equals – united by a common goal: to make research more responsive to the needs of patients.

Dr. Boivin welcomes the opportunity to listen to patients and citizens, recognizing the value that their real-world experiences bring to discussions on how to improve our health care system. He believes that clinicians and policy makers must remain open to new ideas and be ready to challenge their assumptions, no matter how long-held they may be.

Like Dr. Boivin, CIHR recognizes the value that patients and engaged individuals bring to the research enterprise. Through collaborative initiatives like SPOR, CIHR is bringing patients and researchers together to strengthen research and improve health outcomes.

Audio – Interview with Dr. Antoine Boivin

Transcript

Mr. David Coulombe: This is David Coulombe for CIHR's Health Research in Action news. Engaging patients and citizens is an important goal of Canada's Strategy for Patient-Oriented Research developed by CIHR. To share his perspective on patient and public engagement in health research, my guest today is Dr. Antoine Boivin. So, how did you become interested in patient and public partnership in health care?

Dr. Antoine Boivin: I thought as a physician, I have always been struck for many years by the mismatch between the research that is sent to us as clinicians and patients' needs and questions. Often, what I have realized as a physician is that the questions that are most important for patients are often not addressed by research. For example, often research would tell us how to improve lab results associated with a certain disease, but have few recommendations about how to help us improve the quality of life of patients and how to help them fully participate in society with their illness. The other thing that I am realizing is that health care innovations produced by research often fail to meet patients' most pressing day-to-day needs, for example hospital gowns that you will often see in our hospitals really have trouble protecting the dignity of patients, while other alternatives exist and have already been developed.

Mr. David Coulombe: That's a fact. So how does your research influence your clinical practice?

Dr. Antoine Boivin: I would say the first thing it does it that it forces me to listen to patients and question the way I practice medicine, but also the way we organize our health care services. Working with patients, I realize that often my own assumptions about what patients want and what they need, these assumptions that I hold are wrong, and that we really need to engage in conversations with patients to understand this. As a clinician and as a researcher I realize that we cannot work alone and that we need to build on the experience and knowledge of patients to find effective health care solutions.

Mr. David Coulombe: According to you, why is it so important to put the patient and the public at the centre of health research?

Dr. Antoine Boivin: You know that we invest over a billion dollars every year in public money for health care research in Canada. However, our health care system is lagging behind other developed countries in terms of its performance, access to care, etc. We are also realizing that with the rise of chronic illness that patients are really experts in their own health, and they have a lot of experience with the health care system, so they can help us ground research questions and real world problems and find solutions that are more applicable.

Mr. David Coulombe: Last question: What can researchers and research agencies such as CIHR do to help patients and the public participate in health research?

Dr. Antoine Boivin: I would say the first thing we need is to be open as researchers to new ideas that patients and citizens would bring, and expect to be challenged in our own assumptions about what kind of research is most important. The other thing is that we need to take time to build trustful and productive relationships with patients and members of the public, and it is also helpful to work with engagement experts that can advise on most effective engagement strategies that can support fruitful collaborations and manage differences of perspectives. Finally, I would say that CIHR as a research funding agency can help researchers and patients learn from their successes and challenges in working together by supporting rigorous evaluation of engagement activities and build the science of partnership in research.

Mr. David Coulombe: Thank you so much Dr. Boivin.

Dr. Antoine Boivin: You are very welcome. Thank you.

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