HI, MY NAME IS

Ariane Quintal

I am a PhD candidate in Bioethics at the Pragmatic Health Ethics Research Unit of the Institut de recherches cliniques de Montréal. I am passionate about doing impactful bioethics research to shed light on the moral experiences of people living with rare, complex, or chronic illnesses. I am also very interested in integrating patient perspectives to healthcare and research. My research is inspired by pragmatic ethics and involves innovative qualitative and participatory methods. My scholarly work is informed by my involvement in various initiatives as a patient partner.

Education

Research projects

PhD project: Morally problematic situations experienced by adults living with rare diseases (since 2018)

The aim of this participatory action research project is to understand the morally problematic situations experienced by adults living with rare diseases in Quebec in their everyday life or healthcare. It also aims to identify strategies that could help resolve some of these situations.

I am conducting this research project under the supervision of Dr. Eric Racine at the Pragmatic Health Ethics Research Unit. We are developing the project with the input of a working group composed of patient-partners living with rare diseases, representatives of the Regroupement québécois des maladies orphelines, and clinician researchers specializing in rare diseases.

The project features the collection of written and oral testimonies through an online survey, follow-up interviews, a Delphi study, and deliberative sessions. These methods are inspired by pragmatism, which is a theoretical framework calling for the use of deliberative, evidence-informed and emancipatory approaches to address everyday life situations.

Funding: Doctoral scholarships from the Canadian Institutes of Health Research and the Fonds de recherche du Québec – Santé.

Master’s project: Ethical and psychosocial issues raised by the artificial pancreas (2016-2018)

The artificial pancreas is a novel wearable medical technology designed to automate the infusion of insulin for individuals living with type 1 diabetes. This research project sought to identify and characterize the ethical and psychosocial issues raised by the artificial pancreas. To this end, we critically analyzed the medical literature on this technology. We conducted a survey among individuals living with type 1 diabetes and conducted follow-up interviews.

I completed this research project at the Institut de recherches cliniques de Montréal. I have been supervised by Dr. Eric Racine at the Pragmatic Health Ethics Research Unit and co-supervised by Dr. Rémi Rabasa-Lhoret of the Metabolic Diseases Research Unit, which has developed and tested experimental versions of the artificial pancreas.

Funding: Master’s research scholarships from the Canadian Institutes of Health Research and Fonds de recherche du Québec – Santé in addition to a grant from the National Institute of Diabetes and Digestive and Kidney Diseases of the National Institutes of Health.

Selected publications:

The Canadian Agency for Drugs and Technologies in Health will be conducting a more extensive ethical analysis of the artificial pancreas using the last publication as a framework to report their results.

Patient partnership and consultation

In parallel to my main research activities, I have supported the integration of patient partnership and patient consultation to various healthcare areas. I have been guided by my methodological expertise in bioethics and my lived experience with Lyme disease and its complications.

Health technology assessment

Lyme disease project at the Institut national d’excellence en santé et en services sociaux (INESSS) (2018-2020)

INESSS is a governmental agency that formulates recommendations regarding the uptake of drugs, medical technologies, or clinical practices in Quebec based on the best available scientific evidence. INESSS was mandated to reflect on clinical practices to improve the diagnosis and treatment of Lyme disease and its complications. As a patient partner, I ensured that the reports, knowledge translation tools, and recommendations made by INESSS were compatible with patient needs and preferences. These documents are available here and here.

Islet transplantation project at INESSS (2017)

Islet transplantation aims to improve insulin production in individuals with unstable type 1 diabetes. INESSS was mandated to evaluate the relevance of offering this procedure in Quebec. During a short internship, I used the methods I developed during my master’s to (1) conduct an ethical analysis of this procedure and (2) guide scientific professionals on using qualitative methods to consult patients (i.e., developing recruitment strategies, interview guides, thematic analyses). The results of this project are available here.

Improving patient partnership in health technology assessment agencies

I have been a key informant for the two following studies:
Tamara L. McCarron, Maria Santana, Tom Noseworthy, Tracy Wasylak and Fiona Clement. Considerations for Patient and Public Involvement in Health Technology Assessment. 2020. Submitted to the 2021 Annual CAHSPR Conference.
Pomey MP et al. 2020. Developing recommendations for the diagnosis and treatment of Lyme disease: the role of the patient’s perspective in a controversial environment. International Journal of Technology Assessment in Health Care. 1-6.

Clinician education

Digital health and patient engagement at Université Laval (2021)

An online certificate program on digital health for clinicians is being developed by Dr. Alexandre Chagnon for Université Laval. As a patient partner, I will be co-producing an informative video on patient engagement with digital health based on my healthcare experiences while critically addressing this topic through a bioethical lens.

Invited speaker for a graduate course at Université de Montréal (2020)

I was invited to share my experience and my reflections on patient partnership at INESSS during a course on health technology assessment taught by Dr. Marie-Pascale Pomey at Université de Montréal’s School of Public Health.

Informative video on shared decision-making by INESSS (2019)

I provided feedback throughout the development of an informative video produced by INESSS on shared decision-making targeted to clinicians.

Qualitative research

Qualitative research conducted in the Canadian Lyme Disease Research Network (since 2019)

This Network seeks to improve the diagnosis, prevention, and treatment of Lyme disease in addition to clinician education and involves several patient partners. I provide methodological and experiential feedback on a project led by Madison Robertson and Dr. Rylan Egan (Queen’s University). The project aims to describe clinicians’ understanding of Lyme disease to tackle misunderstandings through knowledge translation strategies.

Outreach

I lead various knowledge translation initiatives. I am the co-editor of the Brainstorm Newsletter of the Pragmatic Health Ethics Research Unit, I have presented my academic work in more than twenty interdisciplinary conferences, and I have published open letters aimed at the general public.

Selected conference presentations

Semaine scientifique de l’IRCM (2020)
Please contact me to access the presentation.

World Congress of Bioethics (2020)
Please contact me to access the presentation.

Canadian Bioethics Society Conference (Halifax, 2018)
Presentation available here.

Open letters

Recommander plutôt qu’imposer la vaccination contre la Covid-19.
Quintal A & Ringuette L. Le Devoir, 2020.

Il est justifié d’avoir peur de partager ses données personnelles de santé.
Ringuette L & Quintal A. Le Devoir, 2020.

Responsible AI requires stronger privacy protections and inclusive democratic governance.
Quintal A, Sample M & Racine E.
Comment on the Montreal declaration for responsible artificial intelligence, 2018.

Contact me

Please do not hesitate to get in touch with me for inquiries or potential collaborations.