Did you know that the average person with Parkinson’s only sees their doctor once or twice a year? This means that for every one hour of care, a person has 8,765 hours of self-management annually – that is a lot of time!
There’s growing effort to support people with Parkinson’s navigating barriers to care, and digital solutions are seen as a next step in self-management. Parkinson Canada recognizes that there’s a tremendous need to better support the 100,000+ Canadians living with Parkinson’s. In pursuit of this goal, we put out a call for research proposals to fund a digital health app that will empower people with Parkinson’s to optimize their health. We are pleased to announce the funding was awarded to Dr. Tiago Mestre, a Movement Disorder Specialist, and his team at The Ottawa Hospital who are developing a digital health tool called eCARE-PD.
eCARE-PD is intended to empower people with Parkinson’s in the management of their disease. Users can create healthcare goals, and then use the app to monitor their symptoms and aspects of daily activity, like exercise and sleep. It also includes educational content on different topics related to Parkinson’s. The aim is to help people meet their healthcare goals and understand trends in their disease, so they are more equipped to navigate their Parkinson’s. One of the key strengths of the proposal is that Dr. Mestre’s team involved people living with Parkinson’s in the early stages of the app design and will continue to include the perspectives of people with lived experience in the ongoing refinement of the app, to ensure that it can be personalized to each individual and is something they will want to use long term.
The eCARE-PD app is currently in the development stages, but the goal is to make it available to the broader Parkinson’s community, including people being seen at specialized Movement Disorder Clinics and individuals being cared for within their communities. The research team is in the planning stages for how the funding will be used in the next phase of the tool’s development. While they are not recruiting participants at this time, Parkinson Canada will provide updates as to when opportunities to participate become available. Parkinson Canada is also proud to be working closely with the research team on the project and will be contributing our educational resources to help connect people with Parkinson’s to the information they need to know to best manage their disease.
To hear from Dr. Mestre on what eCARE-PD does, and his hopes for the app, check out this video with more info.