Call for People with Lived and Living Experience

Brain-Heart Interconnectome (BHI)
Image says “Patient Engagement: Seeking patient and caregiver partners with lived or living experience of brain and/or heart conditions to contribute to research” with a picture of people putting 4 puzzle pieces together.
Brain and heart conditions are leading causes of disease and death in Canada with major impacts on patients and their families. The Brain-Heart Interconnectome (BHI) is a new research program that hopes to help prevent, detect, treat and care for brain-heart disorders.

The research at BHI is different because of the people involved. The research brings together researchers, patients, healthcare professionals, and people who are from academia, companies, government, and community organizations.

Want to be part of BHI?

BHI is looking for people with lived and living experiences of brain and heart conditions, their caregivers, and their family members who wish to be part of its work. BHI is looking for diverse people who have many different experiences. For example, they may live in rural or urban settings across Canada and be different ages, and may include racialized individuals (e.g., African, Caribbean, and Black); Indigenous Peoples; persons with disabilities; women and individuals from 2SLGBTQIA+ communities.

The amount of time and length of time we’ll ask from you will be different for different activities. We will explain the time commitment when opportunities are offered. People will be provided with an honorarium for their time, efforts, and contributions, if they wish to receive it. We will do our best to provide other supports that people need so they can participate in ways that work for them.

People with lived and living experience of brain and heart conditions, caregivers, and family members will be able to contribute to the BHI in different ways. For example, this might include:

· being part of a research team,

· being part of a committee (like the Patient Engagement and Knowledge Mobilization Committee; the Inclusion, Diversity, Accessibility, Equity, and Social Justice Committee, and the Open Science Committee, to name a few)

· reviewing grant applications,

· participating in media opportunities, and

· being part of other opportunities that may come up.
 

What do you need to do?



If you have any questions, are not sure what you’re interested in, or if you just want to be on the BHI email list, please email BHI at [email protected] to let us know. The BHI weekly newsletter will share ongoing opportunities.

If you are interested in being part of BHI, please fill out this form Brain-Heart Interconnectome: Call for People with Lived and Living Experience Fall 2024 Survey or email [email protected] with some information about yourself including:

· the types of activities you’re interested in. See the list above for some of the types of activities that are available at the BHI and let us know which ones interest you. Note that you don’t need to have experience in these areas.

· how you might contribute and feel free to share any skills, experience, or perspectives that you want to

· if you’re part of any patient organizations or communities

· if you live in an urban or rural place (and the name and province)

· anything else you feel is relevant and would like to share

· your preferred way to communicate (for example, by email, phone, video call)

· your preferred language of communication (English or French).

Please only share information you’re comfortable sharing.

What’s next?



If we have activities that match your interests, we’ll reach out to you. If we don’t have activities for you right away, we’ll reach out to you when we do. We’ll try our best to engage people who have come forward.