Help Shape the Future of Patient Care
“(As a patient partner), I bring in a totally different perspective: doctors, clinicians, nurses – you’re missing one thing – the patient. And we have stuff to say.”
Patients are at the heart of everything the Heart Institute does, and the hospital knows that patients as well as caregivers, family and friends are the only ones who truly understand what it means to live with a specific heart condition. For this reason, the role of Patient Partner exists: it’s a volunteer opportunity to work alongside clinicians, researchers and staff to improve the quality of care provided at the Heart Institute.
Some testimonials from Patient Partners:
“After coming home from the hospital, I read the information about ways I could be involved, including the role of Patient Partners. At that time, I didn’t feel ready – I needed to build my strength back first. (It can be) hard to get your foot out the door, but it was a very positive experience. Everyone was very welcoming, and it made a difference to me personally – to hear about other people’s experiences and know that I’m not alone. Meeting in person with the other patients and clinicians, hearing what each one of us had to say, the community and support – everything you can be involved in makes you that much stronger. And giving back is a huge part of it: having been through it first hand I felt I really had something to contribute. Any opportunity to tap into real live information can only benefit research. If you answered the research sincerely, you really did get to the bottom of what patients were facing – real information.”
“I found it interesting and would do it again. I participated because I can’t necessarily contribute money but am more than happy to give up some of my time, and contribute my opinion to help the doctors understand what patients are faced with.”
“I think for future (Patient Partners), it can feel a little scary – you don’t know what you’re getting into if you’ve never done it before, you have to take that little leap of faith. If people don’t take on these roles, we wouldn’t be able to advance. I’ve participated many times and have never had an issue, never felt disrespected. So my advice is if you feel you have the inclination to do it, then just go and do it – the hospital will be very grateful.”
You can register to become a Patient Partner through a simple sign up process and once registered, you’re added to a list of potential Patient Partners. Then, based on your skills and interests, you may be matched with opportunities that touch on the issues you care about the most. There is never any pressure for you to contribute to work that you’re not interested in doing, and you won’t be asked to take part in anything that makes you feel uncomfortable. Your contribution doesn’t even have to be on site – for some projects, you may be able to do it from the comfort of your own home.
What are a few examples of potential activities or tasks that you might be offered?
- Answer questions or fill out surveys about your heart condition or patient experience.
- Write or share your suggestions about patient education books or pamphlets.
- Become a member of a committee or research team.
- Participate in a focus group or education session.
- Provide your comments on a draft hospital policy or procedure.
- Share your opinion about what is most important to patients.
Sound like something you might be interested in? Read the Research Patient Partner or Influence Clinical Care pages for more information and to sign up! (Please note that the questionnaire at the end of both of these pages is the same, so by filling it out once you have the opportunity to participate in either or all opportunities.)
Thank you to the patient partners who shared their experiences for this article.