We can’t do it without you!
Participating in research offers an invaluable opportunity to contribute to the advancement of healthcare and improve the lives of others. By participating in research, you and your family become active partners in the search for new treatments, therapies, and cures. Your perspective as a patient or family member helps researchers better understand diseases that affect your family. By taking part, you are making a meaningful difference for others facing similar health challenges. You can get involved in research by becoming a research participant or research partner. Research partners are persons with lived experience that are part of the research team by bringing their unique lived experience or perspective to inform the research process.ÌýYour experience and your voice truly matter.
Ways to get involved
Participant in research
- Are you interested in being part of a research study? We encourage you to speak with your clinical team about how you can get involved.
- Visit Ìýto learnÌýmore about the research studies we are conducting.
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When first approached to join a research study, I was curious about what I could do to help, but I knew that I wanted to give back all the support I received with my child by paying it forward. I ultimately decided to participate because the research objective was focused on trying to help children with a similar condition to my child, and I wanted to contribute in some way to making others’ experience better.
Participating in research was very enriching because it helped me to better understand obstacles that I did not even realize I had once struggled with and to learn new and different ways to approach often stressful and unfamiliar situations. I learned about new steps to develop my autonomy and other ways to help my child, such as additional resources and support. It was like having an apprenticeship in the health care system while allowing me to share my experience and knowledge with others.
I would advise any families thinking of joining research to first listen to what you are consenting to being part of and ask questions if you do not understand. But more importantly, understand that participating in research, even a small amount, can help better the lives of others who are going through some of the most challenging times.
- Aniel
Partner in research
I was invited to participate as a patient partner in the "Take it Too" project. As the mother of a transplanted child, the project aligned perfectly with my interests: actively contributing to my daughter’s care and partnering with the healthcare team to optimize her treatment. Initially, joining such a large team of researchers felt quite intimidating. It was a significant project involving diverse stakeholders from various geographical area and different health care settings. There were many aspects of the research that were unfamiliar to me, including new terminology and concepts that I had to learn, a complex research design. At first, I felt some discomfort because I was uncertain how familiar the researchers were with the concept of patient partners and whether I would be accepted as a legitimate member of the team. The principal investigator (PI) who introduced me to the team made it a priority to establish my legitimacy and ensure I felt included, which was very reassuring.
Since I couldn’t (and didn’t want to) question everything I didn’t immediately understand, I had to exercise a lot of patience and focus on identifying when to seek clarification and where I could contribute my knowledge and experience. My direct relationship with the PI, Beth Foster, was instrumental in this process. She was approachable, which allowed me to provide feedback and comments outside the formal structure of large meetings. I could also quickly clarify specific aspects when needed. Together, we identified areas where my insights would be most valuable, such as co-constructing pedagogical content for training modules aimed at patients and their families, as well as reviewing and refining survey materials.
To others with lived experience who are considering becoming a patient partner, my advice would be this: make sure the members of team you’re joining deeply understands the value patients bring and the principles of patient partnership. Additionally, be prepared to revisit your own journey with illness through different perspectives in order to illustrate with your examples what you think needs to be brought forward in the specific research you are contributing to. Another important piece of advice is to manage your expectations: research is a lengthy process that demands patience, and results take time to materialize. Overall, this experience was incredibly enriching, and I felt a great sense of pride in being part of the research team. It offered me an entirely new perspective on navigating severe illness.
- Annie & Penelope
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Learn more
What is a family partner? Who can become a family partner? Patient Partners Community? How to apply?