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.

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 of the IRCM. 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 a literature review, the collection of testimonies through an online qualitative survey, follow-up interviews, and deliberative sessions with the working group. 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 conducted a literature review, a survey among individuals living with type 1 diabetes, and follow-up interviews.

I completed this research project at the IRCM under the supervision of Dr. Eric Racine (Pragmatic Health Ethics Research Unit) and the co-supervision of Dr. Rémi Rabasa-Lhoret (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.

Publications:

The Canadian Agency for Drugs and Technologies in Health has conducted a more extensive ethical analysis (2021) of the artificial pancreas using the second to last publication as a framework.

Undergraduate internships in basic neurosciences

I have done two internships in laboratory settings during my Bachelor’s degree in neurosciences.

Roles of the receptors GPR91 and GPR99 in the development of the retina (2015)

Roles of the gene Tsc1 in the development of parvalbumin interneurons (2014)

External collaborations

In parallel to my main research activities, I have supported the integration of patient partnership and patient consultation to various areas in healthcare.

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. I have been involved in this project to ensure that the reports, knowledge translation tools, and recommendations made by INESSS were compatible with patient needs and preferences. These documents are available 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 adressing this topic:
– 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. 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. 2021;37.

Clinician education

Digital health and patient engagement at Université Laval (2021)

Université Laval offers a training certificate for clinicians on digital health under the leadership of Dr. Alexandre Chagnon. I have produced a training module for the certificate titled Enjeux de la médecine fondée sur les faits: Regard sur la maladie de Lyme et les maladies rares.

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

This Network seeks to improve the diagnosis, prevention, and treatment of Lyme disease in addition to clinician education. I am a collaborator on a research project aiming to describe clinicians’ understanding of Lyme disease to tackle misunderstandings through knowledge translation strategies since 2019. The project is led by Madison Robertson and Dr. Rylan Egan (Queen’s University).

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.

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

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