What if they could call upon support that is tailored to their needs, available upon request, and provided in the comfort of their own home? This is precisely what Professor Sylvie Grosjean is developing, in partnership with Dr. Tiago Mestre and a multidisciplinary team: the eCARE-PD (Electronic Care for Parkinson’s Disease) platform.
Say hello to CAFY, a chatbot designed to support you
eCARE-PD is a digital platform designed to help patients living with Parkinson’s disease in their day-to-day life.
The heart of the platform is CAFY, a chatbot that allows users to specify their expectations and goals in order to tailor the support it offers to their specific needs.
CAFY offers practical advice, called CAREtips, and suggests reliable resources: information on the disease, links to local support groups and advice from health professionals.
The platform differs from publicly available generative AI due to its high-quality, rigorously researched content. The information it provides comes from official sources, such as Parkinson Canada, Parkinson Quebec, or the Michael J. Fox Foundation for Parkinson’s Research.
Co-designed by patients, the platform can also be used to document symptom progression, promoting autonomy and better day-to-day management of the disease.
“The idea was to design this technology not only for patients, but also with them.”
Sylvie Grosjean
— Professor at the Faculty of Arts
The challenge: to improve patient care and access to care
Initially, Drs David Grimes and Tiago Mestre, from The Ottawa Hospital and the University of Ottawa’s Brain and Mind Research Institute, wanted to create a digital companion for Parkinson patients to meet the need for safe, reliable information, improve access to adapted resources, and provide personalized advice.
However, they quickly encountered a new challenge: how to ensure that this solution was genuinely useful and met the actual needs of people living with the disease.
In response, Professor Sylvie Grosjean, who heads the CTI-Lab at the Faculty of Arts and is an expert in health communications, joined the initiative by incorporating her co-design methodology into the research. Her participative approach hinges on co-building the technology with patients as well as health-care professionals.
“The idea was to design this technology not only for patients, but also with them,” Professor Grosjean explains.
The project also involved experts from the fields of medicine, social sciences, engineering, law, arts and management to gain a well-rounded perspective.
“Developing a platform is a real challenge. Due to its technological, social and ethical aspects, it’s impossible to succeed if everyone works in silos.”
Transforming the future of care
This fall, Version 3 of eCARE-PD will undergo an array of tests led by patient partners. The longer term goal is to launch the platform nationally, thanks to support from Parkinson Canada and the Canadian Institutes of Health Research. This infrastructure could also serve as the basis for other digital health-care applications adapted to other diseases.
Currently only offered in English, eCARE‑PD will be translated into Canadian French, a step that will need to take into account the linguistic issues specific to our own context.
In future, the project plans on integrating AI, notably by adding a conversation system based on a large language model (LLM) that would allow patients to interact with the platform in writing or by converting text to speech. This function is particularly important given the motor skill or vocal challenges associated with this disease, which can complicate the use of a keyboard or oral communication.
If properly integrated, AI has great potential to transform support to patients and reduce the workload of health-care teams.
Efficient innovation in health care rests on interdisciplinary cooperation as well as the participation of the very patients we want to help.
