By Yasmine Elmir
Dr. Bertrand Lebouché’s calling is helping patients’ voices be seen and heard in the health care system. An Associate Professor in the Department of Family Medicine and a HIV and HCV primary care specialist, Dr. Lebouché completed his MD and residency at Université de Lille II Droit et Santé, in France. “I want to help those who disappear in the health care system because they are not taken care of, because they think they have an illness they cannot talk about,” says Dr. Lebouché. “I want to help break the stigma and make them reappear.” It is this objective that led him to Université Laval to complete a PhD in Theology and Religious Studies in 2004. “There was a very famous teacher at Université Laval, Pr. Raymond Lemieux, and I wanted to work with him on the concept of people who are actually disappearing in health care systems.”
Dr. Lebouché works as a family physician at the McGill University Health Centre (MUHC) in the Chronic Viral Illness Service (Glen site) where 70% of his patients have HIV. “HIV patients must be given comprehensive care, a holistic approach, and only family medicine can do that. That is why I chose family medicine; it allowed me to do exactly what I wanted to do. Family medicine is global care on patients who have specialized diseases.” A desire to be an advocate for HIV patients was slowly brewing inside of him since the beginning of his studies. “What really struck me when I was a medical student in France is when I saw the first cases of HIV in children, in pediatrics,” he explains. “One child kept saying that it was not fair that he had this disease, and his family would not let him talk about it. He passed away afterwards without having the opportunity to tell his story. It is like he just disappeared. Until this day, I still remember exactly what his hospital room looked like, it really touched me.” During his residency in family medicine, Dr. Lebouché found himself in a HIV unit during his second rotation. “I liked it so much that I asked to stay, and I never left. I have continued taking care of HIV patients.”
Dr. Lebouché holds a Strategy for Patient-Oriented Research (SPOR) Chair in Innovative Clinical Trials in HIV care, awarded by the Canadian Institutes of Health Research (2017-2022), in recognition of his commitment to patient engagement, his multidisciplinary approach with an incredible research team, dynamic training program, and access to an impressive network of relevant experts who are co-mentors of the Chair. “I want to make patients with stigmatized diseases reappear in research. I want to get them more involved with technology. This is where my passion for patient engagement came from. Everything I do is connected and I did not realize that earlier,” he notes.
Since 2019, Dr. Lebouché has been adapting a patient-conceived smartphone application (Opal), in use at the Cedars Cancer Centre of the MUHC, for HIV care. This app has been recognized widely, including receiving the “Coup de Coeur des ministres” from Quebec’s Réseau de la santé et des services sociaux. It offers patients several important functions, including access to some of their medical data, appointment check-in, and online patient reported outcome measures (e-PROMs) completion. The routine administration of the e-PROM I-score with the app and the sharing of its results with the physician, they expect, will help guide adherence-related discussions to address issues of importance to patients and limit the impact of adherence barriers to HIV therapies. “This application is important because it was created by a cancer patient, Laurie Hendren, who was also a great researcher at McGill,” he explains. “It was not created to meet the needs of the caregivers but the needs of the patients. To adapt OPAL for HIV care, we have focus groups and interviews with patients to find out exactly what their needs are.” The application has been successfully used in oncology for the past two years and Dr. Lebouché wants to recreate this success for his HIV patients.
Dr. Lebouché also recently received a $ 99,540 grant from the MI4 Emergency COVID-19 Research Funding (ECRF) for his project “Use of OPAL for COVID, a mobile application, for real-time at home follow-up of people who test positive for COVID-19 at the Glen site: a feasibility study.” A primary aim of public health agencies is to identify, monitor, track, isolate, and treat anyone with symptoms of COVID-19 to prevent transmission. Around 90% of those who test positive for COVID-19 stay home after their diagnosis. “It is terrible when people have COVID-19, they cannot see their loved ones because they are very contagious. They have to isolate themselves during a scary time,” says Dr. Lebouché. He is teaming up with Opal app creators Dr. John Kildea, Dr. Tarek Hijal and Dr. Jamil Asselah to create an app that provides resources for COVID-19 patients isolating at home. Patients will be able to self-monitor symptoms and connect with health care providers if their illness worsens. This innovation will improve safety for those isolating at home with COVID-19 while also providing critical data on COVID-19 illness to help us better understand the disease. “We want to create a safe space, so that COVID-19 patients know that even if they are home alone, they have contact with a nurse every day. We want to help them feel connected with the health care system,” notes Dr. Lebouché. “This is truly the role of research in family medicine. When there is a new health issue that comes up, we use the tools that we already have to determine how we can help our patients.”
Dr. Lebouché, who is a clinical researcher, supervises MSc, PhD, and Postdoctoral students in the Department of Family Medicine. “I supervise many students, which is why I have three incredible research assistants Kim Engler, David Lessard and Yuanchao Ma. I want to make sure that there is always someone available for our students,” he says. He is currently supervising medical students who are working on an application that can connect doctors or caregivers who need language translation for their patients with medical students who speak several languages. Dr. Lebouché is also currently working on the development of a chatbot, MARVIN, with a group of engineering students at Polytechnique Montréal with their Pr. Sofiane Achiche. Using a co-design methodology, a multidisciplinary group including physicians, patients, pharmacists and engineers collaborated to develop the Independent Computing Architecture (ICA). A user-centred systematic design approach was applied in the conceptual phase to elucidate user needs and assess design parameters. By working on these technological tools, Dr. Bertrand hopes to bring on-going support to patients, even from afar.