Empowering Communication: The perspective of English-speaking patients with ALS in Quebec on voice cloning technologies

Amyotrophic lateral sclerosis (ALS) is a neurodegenerative motor neuron disease that often leads to the loss of speech, significantly affecting communication and quality of life. As speech deteriorates, persons with ALS (pALS) increasingly rely on augmentative and alternative communication (AAC) tools (e.g. text-to-speech apps). Traditional voice preservation methods require extensive recordings and may not fully capture the emotional expressiveness or identity of the speaker. Voice cloning – a technology using artificial intelligence – can replicate a person’s voice using only a short audio sample. It offers a faster, more accessible, and potentially more natural-sounding alternative.

This project aims to evaluate the perception of voice cloning technologies among Anglophone pALS in Quebec.

Through a mixed-methods approach involving interviews, questionnaires, and hands-on use of voice cloning tools, we will explore how pALS perceive the naturalness, expressiveness, and identity preservation of their synthetic voices created with voice cloning technology. We will also assess how factors such as the severity of speech impairments, recording length, and recording tasks influence their perception.

The findings will inform the development of clinical guidelines for speech-language pathologists and support shared decision-making between clinicians and patients. Ultimately, our research seeks to empower pALS to maintain their voice, identity, and social participation throughout the progression of their disease.

Outputs:

March 2026
Invited presentation, 1res rencontres RésO-MAP (Paris). Presented project and strengthened collaboration with Hôpital Fondation A. de Rothschild (Michaela Pernon).

December 2025
Poster, Allied Professionals Forum (International Alliance of ALS/MND Associations), Toronto.
Kheloufi, Y., & Bouvier, L.Empowering Communication: Evaluating Voice Cloning for Anglophone ALS Patients in Quebec.

Establishing partnership with ElevenLabs and Bridging Voice.

November 2025
Oral presentation, Communauté de pratique orthophonique en SLA/MMN du Québec (Montreal).
Kheloufi, Y.AI Voice Cloning in ALS.

Collaborative Creation of Podcasts to Promote the Implementation of Virtual Reality in Children’s Health Care

Medical procedures can cause significant pain and anxiety in children, which may be exacerbated in language minority contexts. Virtual reality (VR) is an effective non-pharmacological distraction that can reduce pain and anxiety without requiring language proficiency. Although Shriners Hospitals for Children–Canada has integrated VR into its bilingual care, gaps in structure and resources remain, and broader implementation faces barriers.

In Quebec, English-speaking children may experience increased communication anxiety and reduced healthcare use when care is not delivered in their preferred language, potentially leading to poorer outcomes. Addressing language barriers is therefore essential.

To support VR implementation, our team will co-develop a 5-episode English-language podcast series targeting healthcare professionals in Quebec. The series will address barriers, facilitators, and real-world use of VR in pediatric care, with a focus on improving equity for English-speaking children. It will be disseminated via the McGill website and major podcast platforms, with the goal of promoting VR adoption to reduce pediatric pain and anxiety across language contexts.

Outputs:

• A manuscript on podcasting as a knowledge translation tool has been completed and will be submitted to Digital Health Journal (April 2026).
  (Audience: research community, knowledge brokers)

• A second manuscript on integrating podcasting into academic curricula is in development (submission: Summer 2026).
  (Audience: research community, educators)

• A podcast series was produced (7 interview episodes + intro and summary) with accompanying educational materials.
  (Audience: healthcare professionals and stakeholders in pediatric VR implementation)

• Findings were disseminated at multiple national and international conferences (posters and oral presentations).
  (Audience: research community, knowledge brokers)

• Educational integration included a course assignment (Mount Allison University) and a lecture to ~150 nursing students at McGill.

• A workshop and national presentation (PICH2GO 2025) trained ~250 participants on podcast-based knowledge translation.

Gestational diabetes and preeclampsia in Anglophones of Québec: dissemination of results through open access

Previous research suggests that Anglophones in Québec may face an increasing risk of adverse birth outcomes. Earlier analyses have shown that, compared with Francophones, Anglophones have a higher risk of stillbirth and preterm birth. To better understand the factors underlying these disparities, funding was awarded by Dialogue McGill in 2023 to support two complementary studies examining the risk of gestational diabetes and preeclampsia among Anglophones versus Francophones. These conditions are significant pregnancy-related morbidities with important implications for maternal and infant health. The researchers plan to publish the findings from both studies in peer-reviewed open-access journals to ensure broad dissemination. In parallel, they are collaborating with knowledge user Marianne Bilodeau-Bertrand to translate the results into surveillance-related activities aimed at informing the Québec Ministry of Health and Social Services.

Outputs:

Two manuscripts were published in peer reviewed journals:

1) Auger, N., Ayoub, A., Bilodeau-Bertrand, M., Lafleur, N., & Wei, S. Q. (2025). Ethnocultural status and risk of preeclampsia in a Canadian setting. Pregnancy Hypertension, 39, 101202. https://doi.org/10.1016/j.preghy.2025.101202

2) Auger, N., Bilodeau-Bertrand, M., Ayoub, A., Lafleur, N., & Wei, S. Q. (2025). Increasing risk of gestational diabetes in an ethnocultural minority of Canada. Journal of Immigrant and Minority Health, 27(2), 191–199. https://doi.org/10.1007/s10903-024-01667-6.

Output recipients include members of the academic community as well as data and knowledge users at the Institut national de santé publique du Québec and Ministry of Health and Social Services of Quebec.