What is a Patient Partner?
A patient partner is a current or past Heart Institute (UOHI) patient or caregiver who joins a project team or committee as an equal team member. Patient partners are experts with unique experience and knowledge gained through living with a condition or illness, receiving treatment or supporting a loved one who is a UOHI patient. This experience and knowledge is vital to the improvement of care and research at the Heart Institute.
Why become a Patient Partner? The role of Patient Partner is for those who are interested in:
- Helping shape the future of patient care and research at the UOHI.
- Meeting other patients with similar conditions.
- Sharing valuable information about living with a heart condition.
- Working together with physicians, researchers, other clinical staff and patients towards positive change.
- Learning more about research being done on cardiovascular care and accessing the latest insights into care and research.
- Giving back to the community.
Patient Partners have:
- Experience at the UOHI or other partnering centres.
- An interest in positive change.
- Time to give.
- Good listening skills.
- Respect for other’s views, even when they don’t match your own beliefs.
- Ability to give helpful feedback.
- A love of teamwork.
As a Patient Partner, what might you be asked to do? Here are just a few examples:
- Help develop research questions and determine what outcomes are most important to patients.
- Answer questions or fill out surveys about your heart condition or patient/ caregiver experience.
- Read and comment on documents related to research or patient care.
- Co-develop educational materials.
- Serve as a committee member to share your insight and experience on topics of discussion.
- Sit in on or lead a focus group or education session.
- Help us recruit other patient partners.
- Help us recruit study participants.
- Mentor new patients or research participants.
- Share results of research studies.
- Complete administrative tasks such as assisting UOHI staff with booking meetings or planning patient engagement events.
If you want to find out more about the expectations and responsibilities of Patient Partners, please read the Patient Partner Guide (PDF). This guide is provided to Patient Partners who are matched with a project.
Patient Partner Selection
There is a four-stage process to becoming a Patient Partner at the UOHI:
- Register and complete the questionnaire. The questionnaire will ask you to tell us a bit about who you are and your patient experiences. Your answers will help us match you with opportunities that make the best use of your time and skills. Your answers are kept confidential.
- Once we find a potential role for you, we will invite you for a first meeting. We want to make sure the partnership is a good fit for everyone.
- Depending on the tasks involved in your partnership, there may be a few more steps before you begin. For example, if you will be hearing about the care of other patients, you will sign a confidentiality agreement and complete Privacy training. Other examples include obtaining a police records check or health and safety training.
- Once you are ready to begin your partnership, we will meet to talk about everything you need to know so that you are successful in your new role!
Please complete the following questionnaire but keep in mind that you do not need to answer any questions you are not comfortable answering.
If you have any questions please contact firstname.lastname@example.org
Patient Partners in Action
Patient Partners have an opportunity to contribute in a meaningful way to the work of the Institute. The following are testimonials from Patient Partners in action.
As a former nurse and heart patient I am passionate about good health. Specifically, women’s heart health. I could not have imagined that this particular passion would emerge in my life, and I now take great pride in helping other women through my volunteer work.
I became involved in volunteer work at the Heart Institute in June of 2007 to contribute to fundraising efforts. I am proud to say that I have been involved in raising over one million dollars in support for the Canadian Women’s Heart Health Centre (CWHHC).
In 2013, I had the opportunity to join the Women’s Heart Champion Advisory Committee for the CWHHC. Our challenge was to look at the experience and needs of women and design programs to support them. Our committee created the Women @ Heart Peer Support Program - a program for women with heart disease, run by women with heart disease, providing our peers with information, education, and support. As a heart patient myself, I was honoured to help shape the design of the Program based on my personal experience and understanding of the physical, emotional and psychological impacts of what it meant to be a woman with heart disease.
I have been a Women@Heart Peer Support Leader of this Program since inception in 2015. I am currently leading my 6th group of women in our local community.
The more I learned about women’s heart health through my advocacy work, the more my desire to help with education and awareness initiatives at the CWHHC grew. I enjoy seeing the profound effect I’m having on my peers – other women with heart conditions – in our community.
Today, more research is being conducted around women’s heart health, but there is still work to be done. Women and health care providers need further education regarding how heart disease presents in women. The rate of women who die from their first cardiac event is high, and some women will experience symptoms for as long as a year undiagnosed. Working with UOHI staff and other volunteers, I want to continue to do what I can to improve women’s heart health.
My story with the University of Ottawa Heart Institute goes back over 10 years, since I was diagnosed with an issue that eventually needed surgery in 2018. After experiencing exceptional care over such a long period as an out-patient, and then undergoing a life-changing and innovative procedure, and an amazing rehabilitation program, I knew the time had come to give back to the Institute.
While my regular job and family commitments don’t allow me to offer too many hours as a volunteer, I eventually joined the Board of the Alumni Association and am happy to contribute my skills there..
Last year, through the Board, I had an opportunity to participate in the Patient Review Committee for pilot project funding applications to the Ottawa Region for Advanced Cardiovascular Research Excellence (ORACLE). My role was to assess all the innovative research proposals from UOHI researchers and research teams to determine their level of patient engagement, to ensure that this vital aspect was well represented in all the projects, and make suggestions where some could be enhanced in that respect.
Though I do not have any medical training, I am an active researcher and so have experience of drafting and evaluating research proposals. I was extremely grateful for this opportunity to use my academic skill set. It was a truly meaningful experience to witness the exciting, ground-breaking, and highly innovative research that UOHI does. The projects covered a wide-range of cardiovascular-related issues, from creating new indications for the evaluation of disease, to the development of screening tools for specific conditions; from the implications of marijuana on cardiovascular health, to the prototyping of surgical tools.
UOHI is a pioneering leader in cardiac care on the global stage, and we are fortunate to have such an institution, and its wonderful employees in the heart of our community. I am privileged indeed to be able to contribute in a small way to its future.
Being the beneficiary of the high-quality care provided to heart patients by the University of Ottawa Heart Institute (UOHI), I looked for an opportunity to get involved and give back to the hospital. My objective was to find a way to make a contribution, given my lived experience.
I am passionate about turning the insight and knowledge of the experts at the UOHI into information that patients can understand and use to manage their conditions in the best way possible. Given this, I was excited by the opportunity to be a patient representative on the two Patient Councils at the Institute. In that context, we regularly have an opportunity to review guides, brochures, web content and other information that is provided to patients and their family members about living with a specific heart condition. When I have an opportunity to review alongside hospital staff, I can put a “patient lens” on the review, thinking about what makes sense to me, given I have no formal medical background. It is one thing for the scientists, doctors and staff to understand the realities and impacts of a condition or procedure from a technical perspective; but insight about living with that condition – feeling the physical impacts, the emotional roller coaster, the affect on relationships with friends and loved ones – can only come from us.
This passion is also the basis for other projects I am working on with the UOHI. For example, I work on planning in person events and am exploring the idea of podcasts to share the knowledge of the most recent research with respect to specific conditions with patients – both current and alumni. I am also a Peer Support Leader for the Women@Heart program.
We are privileged to have the UOHI in our community. I welcome the opportunity to give back in a way that makes things better for patients who need the hospital going forward!