ARCHIMEDES
Patient Partners
Our patient partners bring diverse lived experiences, perspectives, and insights that help inform and strengthen the work of ARCHIMEDES. By sharing their experiences and collaborating with the team, patient partners help ensure that research and data-sharing initiatives remain patient-centered, meaningful, and responsive to the needs of individuals and communities across Canada. We are grateful for their ongoing contributions to advancing health research and innovation.
Mike Yeates and Laurie Proulx, patient partners with ARCHIMEDES, speaking at the Canadian Health Data Platform Summit, Oct. 7, 2025.
The ARCHIMEDES Patient Partner Council
The Patient Partner Council of ARCHIMEDES is a dedicated community of individuals with lived experience of diverse health conditions who are committed to helping the ARCHIMEDES team improve our ability to use and share health data to improve the health of Canadians. Patient partners on our team have various opportunities to contribute their time and perspectives to ARCHIMEDES’ activities and projects.
How to Get Involved as a Patient Partner
Learn about ARCHIMEDES
Read the Patient Partner Onboarding document to learn about ARCHIMEDES, patient engagement, and what being a patient partner involves.
Review opportunities
Patient partners can share perspectives, provide feedback, join discussions or meetings, review materials, or collaborate on specific projects.
Consider your interests
Involvement is flexible and based on your comfort level, interests, and availability.
Connect with us
Fill out the form below to connect with the ARCHIMEDES team and start your journey.
Connect with the ARCHIMEDES team here
Current Patient Partner Projects
ARCHIMEDES patient partners contribute to a range of ongoing projects and initiatives focused on health data sharing, governance, public trust, and patient-centered research. Current and recent projects include:
Scoping Review: Data Standards in Cardiovascular Clinical Research
A scoping review is a type of research synthesis that aims to map existing literature on a broad topic to identify key concepts, research gaps, and types of evidence.
Patient partners are providing feedback on manuscript drafts and helping ensure findings reflect patient and public priorities related to cardiovascular health research and data standards.
Scoping Review: De-identification of Health Data for Open Sharing
Patient partners contribute perspectives on privacy, data sharing, patient trust, and responsible governance of health data used in research.
Canadian Patient Perspectives on Data Sharing Survey Study
This study explores how patients and caregivers in Canada feel about sharing health data collected through clinical care and research participation, including perceived risks, benefits, and preferences for data sharing. Patient partners have helped modify and review the survey to improve readability, clarity, and accessibility for participants. Patient partners also helped with participant recruitment and sharing the survey within their network to help us reach a diverse, pan-Canadian group of patients and caregivers.
Upcoming Patient Partner Projects
Understanding Informed Consent Language for Data Sharing Study
Patient partners support a study examining how participants’ perspectives on the clarity and understanding of the open-access and controlled-access data sharing consent templates and explore whether patients’ perceptions differ based on three conditions of consent form presentation. These formats will be three conditions of consent form presentation: 1) the written consent form alone; 2) the written consent form with the ability to ask questions to a researcher; and 3) the written consent form with supplementary visual materials. Patient partners are involved in this study through presentations and focus group involvement.
ARCHIMEDES Public Trust Campaign
The ARCHIMEDES Data Break public trust campaign aims to improve health data literacy and strengthen public confidence in the ethical, secure, and responsible use of health data through video and different content types featuring patients and members of the public. Patient partners will contribute to the development of videos and educational materials focused on improving health data literacy, trust, transparency, and public engagement in health data research.
Frequently Asked Questions
What is a patient partner?
A patient partner can be an individual with lived experience of a health condition, caregiving experience, or experience navigating the healthcare system who works collaboratively with the ARCHIMEDES team to help inform research and health data initiatives.
How are patient partners involved?
Patient partners can support ARCHIMEDES in various ways, depending on their interests, availability, and comfort level. This may include sharing perspectives, providing feedback, taking part in discussions or meetings, reviewing materials, or working with the ARCHIMEDES team on specific projects. Together, we decide what types of involvement feel meaningful and appropriate for each patient partner.
Why do patient voices matter?
Patient perspectives help ensure that projects supported by ARCHIMEDES are grounded in real-world perspectives and priorities for patients and the public. By learning from lived experience, the ARCHIMEDES platform can ask better questions, build trust, and support research that leads to meaningful, real-world impact for patients and communities.
Do I need research or scientific experience to become a patient partner?
No. Patient partners are not expected to have scientific, medical, or technical training. The most important contribution is lived experience and a willingness to share perspectives and collaborate with the team.
How much time does being a patient partner involve?
Participation is flexible and may involve occasional meetings, emails, or feedback requests. The level of involvement depends on each patient partner’s interests, availability, and the projects they choose to participate in.
Are patient partners compensated?
Patient partners receive compensation for providing their time, knowledge and work participating in specific ARCHIMEDES projects or activities.
Can I choose the types of projects I participate in?
Yes. Patient partners can decide which opportunities they would like to participate in based on their interests, and availability.
Our Partners and Funders
ARCHIMEDES collaborates with leading institutions to advance health research. Our partners provide expertise, data, and tools to drive innovation and accelerate scientific discovery.
This platform is funded by Canada First Research Excellence Fund for the Brain-Heart Interconnectome (CFREF-2022-00007).
