The term ‘patient’ describes individuals with lived or living experience of a brain and/or heart condition and includes informal caregivers (such as family and friends) and individuals who may be at risk of, or otherwise affected by, brain-heart conditions. The BHI engages patient partners in a variety of ways, as members of research teams, as peer reviewers, and committee members.
This article highlights the experiences of a BHI patient partner, Alexandra Rego, who, in addition to being involved in the BHI, has also been involved with other research organizations including the University of Toronto, Bloorview Research Institute and the Sex Information and Education Council of Canada (SIECCAN).
Getting Started as a Patient Partner
Alexandra first found out about BHI in 2024, through a LinkedIn post shared by a colleague. Alexandra has hydrocephalus and suspected idiopathic intracranial hypertension (or IIH) and contributes as a patient partner in many ways – as a peer researcher, co-creating resources for people with disabilities, and ensuring awareness and education about brain and heart conditions is available for those who need it.
Alexandra has a background in teaching, specifically in educational assistance. During the COVID19 pandemic she got involved in mentoring, when she realized that there was a lack of peer support for people with disabilities. She was then approached with an opportunity to join a research team at the University of Toronto, as a peer researcher. A peer researcher is a term, often synonymous with patient partner or person with lived experience, for an individual who collaborates with research teams to enhance the value of the project, often done through bringing their lived experience.
The project was on sexual and reproductive health for people with disabilities, an area that is lacking in research. The opportunity was a great fit for Alexandra. She brought her lived experience and interest in improving reproductive health research for people with disabilities. Alexandra then also found opportunities to bring her expertise as a lived experience consultant to projects at SIECCAN and Holland Bloorview.
Alexandra explained that it was sort of like a domino effect, “Once you’re in the space, and you have done one thing, a lot more doors open.”
At SIECCAN she helped co-develop educational resources on sexual health for young people with physical disabilities. At Holland Bloorview she co-facilitated youth advisory council meetings and contributed to the redesign of the Disability and Sexuality Resource Hub. Alexandra plays an important role in ensuring that the perspectives of youth with lived experience are amplified and contribute to changes that promote accessibility.
Working with the BHI
Alexandra’s experience at the BHI started as a peer reviewer for BHI funding competitions. Patient partners are involved in the peer review process to ensure that proposed studies are not only scientifically sound but also relevant to those directly impacted by brain-heart conditions. Patient perspectives add significant value by highlighting real-world priorities, co-production principles, and potential barriers to implementation that researchers may overlook. Their input helps align research goals with patient needs, ultimately leading to more impactful, patient-centered healthcare innovations (Farrell et al., 2024; Richards et al., 2024).
After participating as a peer reviewer, the BHI patient engagement team was looking for patient partners to co- develop resources to support patient partners as peer reviewers. Alexandra was a great fit for this role, as she was new to the peer review process and knew firsthand what types of resources would be helpful to novice peer reviewers. Due to her lived experience with a physical and cognitive disability, she focused on creating resources around accessibility. This included an accessibility checklist to make it easy for patients to request additional support and ensuring that all documents were screen-reader friendly.
Alexandra highlights that providing a list of accommodations before-hand is a game-changer, because it shows people with accessibility concerns that you’ve already thought about them. This is especially important for meetings and events, as many people with disabilities, whether visible or not, often cannot attend in-person, even if the space is physically accessible. Alexandra also contributed to the ‘BHI Safe Spaces Tips’, to ensure that all BHI members can contribute meaningfully to meetings and events.
Hosting hybrid events, with intentional modifications for those attending virtually, can go a long way in improving inclusive participation. Alexandra explained that the requirement to disclose a disability can be an additional obstacle. A huge barrier is removed when the individual is not required to disclose their disability. As a BHI patient partner, Alexandra has been able to attend several BHI events and workshops, leveraging the option to join virtually from her home in Mississauga. The annual IDEAS event, Kahkiyaw wahkomâkanitik (All my relations), and the June Café Scientific event, provided insight into wide array of research going on at the BHI.
Breaking Barriers
Just like trainees and academics, Alexandra often experiences imposter syndrome in her role as a patient partner. Working alongside individuals with advanced degrees and extensive clinical backgrounds can be overwhelming at first, and Alexandra often questioned if she truly belonged in research spaces. As time went on, however, she found that the teams she worked with were always very supportive of her role as a patient partner or peer researcher and provided opportunities that were well suited to her lived experience. She found support from team members, who expressed they had similar experiences when first getting involved in research.
When involved with the University of Toronto Alexandra was given the opportunity to conduct interviews, code transcripts, analyze data, and lead and co-lead papers. Bringing her lived experience to this role helped participants openly share their experiences, knowing that they were talking to someone who would understand their perspective. It also enhanced data collection and interpretation, helping to surface nuances that might otherwise be overlooked. Based on her lived experience, Alexandra was able to identify critical themes that enriched the research and ensured it reflected the realities of people with disabilities. After the study she then was the lead author an article for Healthy Debate that highlighted the results of their research (Rego et al., 2023).
Looking Forward
Alexandra has now been a patient partner for over 3 years and looks forward to continuing to work in research. Sheenjoys the flexibility that comes with being a patient partner, which, depending on the project or organization she is working with at the time, brings a diversity of projects to contribute to. As someone with a disability, being a patient partner also brings added flexibility that allows her to easily attend medical appointments and prioritize her health, as needed.
Alexandra’s role in the research project shows the importance of involving patient partners in research, as well as validates her lived experience, which makes it more rewarding. She continues to work closely with the BHI and ensures that patients with both physical and cognitive disabilities can contribute to advancing brain-heart research. The most rewarding part is finally having her voice heard, and respected.
“I know my lived experience matters, and I know that, at the end of the day, it’s helping to make a bigger impact.”
Are you interested in being a Patient Partner?
The BHI is grateful for the many patient partners who are members of this network and provide their lived experience to a multitude of projects. Their involvement supports equitable research and helps create a diverse BHI network.
If you, or someone you know, has lived experience with a brain and/or heart condition and would like to get involved with the BHI in this capacity, please express your interest via this form.
References
Farrell, A. C., Lawson, J. A., Ovarian Cancer Canada’s Patient Partners in Research Team, Ross, A., & Tone, A. A. (2024). Advancing Research Alongside Patient Partners: Next-Generation Best Practices for Effective Collaboration in Health Research. Current Oncology, 31(11), Article 11. https://doi.org/10.3390/curroncol31110513
Rego, A., Evans, M., Brown, H. K., Zafar, S., Liu, K. J., & Ogbonna, N. (2023). Access denied: Pandemic highlighted issues in accessing sexual and reproductive health for persons with disabilities. Healthy Debate. https://healthydebate.ca/2023/09/topic/pandemic-accessing-sexual-reproductive-health-disabilities/
Richards, D. P., Twomey, R., Flynn, T., Hunter, L., Lui, E., Stordy, A., Thomas, C., & Khan, K. (2024). Patient engagement in a Canadian health research funding institute: Implementation and impact. BMJ Open, 14(7), e082502. https://doi.org/10.1136/bmjopen-2023-082502