The CONNECT Collaborator Series is an interview series where we host conversations with healthcare professionals and partners to encourage deeper collaboration in the healthcare industry.
Lorie Spence: Welcome to the CONNECT Collaborator Interview Series where we host 10-minute conversations with healthcare professionals, stakeholders and partners with the goal of encouraging deeper collaboration in the healthcare industry. Today’s guest is Cathy Ammendolea. Cathy is the Chair of the Board of Directors for the Canadian Breast Cancer Network. She is a person with lived experience and oversees the leadership and operations of the organization. In her role as chair, Cathy ensures that the patient perspective is used to inform breast cancer decision-making in Canada. She regularly consults on industry, government and organizational initiatives in Canada to promote the patient voice and champion the best interests of persons living with breast cancer. Cathy, welcome and thanks for being here.
Cathy Ammendolea: Thank you for having me. It’s a pleasure to be here.
Lorie Spence: Let’s get started with you telling me a bit about your role at CBCN and the type of collaboration projects you’re involved in.
Cathy Ammendolea: I am the Chair of the board at CBCN and as you mentioned, I have a lived experience of having had breast cancer. We are the Canadian Breast Cancer Network and our board members are across the country. Each board member has also had a breast cancer diagnosis over their time. My experience comes as the face of the board and also as a person with this perspective of having had the lived experience. I was diagnosed as a young woman and I’ve seen a lot of changes and a lot of good that has come out since my early days of being diagnosed. I’m very passionate about CBCN. I work closely with the staff and the staff also follows our philosophy. We’re very grateful that we have staff that understands breast cancer and is very much engaged in following our pillars in terms of advocacy, education, and ensuring that all patients across the country get what they need, as best as we can follow through and follow up on it. It’s also very nice to collaborate with stakeholders such as yourself with this project to honour HER2 and all other various projects that we do in our organization.
Lorie Spence: You alluded to it a little bit but maybe you can expand on why it’s so important to have someone with lived experience collaborating on the development and implementation of these types of tools and resources.
Cathy Ammendolea: As you and others might understand, in the early days any research and anything that had to do with treatments, etc. and how they were put together did not involve the patient’s voice and the perspective of the patient. Over time, what has happened is that pharmaceutical companies and other entities have realized that around the table, the missing link was the voice of the patient who has lived through the experience. In the early days, it was very, very uncomfortable to see how decisions were made. When I understood what decisions had been made, I realized that there was so much more that they could have added or not added in some documents that were created. It was created without the voice of the patient.
I’m happy to say and share that that perspective is now honoured and is very much part of many things that are happening in the world of breast cancer. Patients have a deep understanding of the everyday issues that a person has encountered and will encounter through their path of diagnosis of breast cancer. We understand the financial burdens, we understand what families go through, and we understand the psychological impact that comes with a diagnosis of breast cancer. Not to mention, we also want to ensure that any digital tools and tools that we design have an impact across the country. We want to make sure that what we develop at CBCN and what we develop with the partnerships of stakeholders, such as pharmaceutical companies, is just to ensure that it gets through to patients across the country because we do have a country with gaps. We all understand that there are gaps.
Lorie Spence: I think one of the things that we saw was the value in the collaboration of CONNECT with CBCN and having your role as part of the authorship of the counselling tool. Maybe just speaking to counselling tools in general and this shift, why do you think these collaborations are so important moving forward?
Cathy Ammendolea: It’s being able to provide input on tools that allow a patient the opportunity to contribute to the decisions being made about their treatment plan. And that’s invaluable to provide patients and empower them with such tools in order for them to have a quality conversation with their physician, sit and discuss the options, be informed of what options are available, and how can they get those options, and be sure that the options that they’ve chosen, are right for them. Empowering the patient with these tools is probably the best thing that can happen for newly diagnosed patients and their families. Sometimes it’s not the patient that will be discussing these, sometimes it will be a partner or somebody that you know that will be going with the patient to have these conversations with their physician. it is a very powerful tool to have for patients as we move forward.
Lorie Spence: As we look forward, what do you think the future of healthcare collaborations looks like to you?
Cathy Ammendolea: As I have said, there has been a meaningful shift over the years in allowing the patient voice to be more involved. I’m very grateful that I have been involved. My involvement has taken me to global initiatives where I interact with other countries and individuals like myself who have had a breast cancer diagnosis, to understand the limitations that others face and what we could do better, by learning what they have that we may gain for our population. The involvement came a little bit later than what we wanted it to be but it’s very nice to see that this step is now a big part of how things are done and that we will be moving forward with the patient’s voice forever. I don’t see it going backwards anytime soon.
Lorie Spence: We agree. Finally, can you let everyone know the best place to connect with you?
Cathy Ammendolea: You can connect with me through the website at CBCN.ca or you can email me at CBCN@CBCN.ca. Our Instagram we are @CBCNetwork, on Facebook @theCBCN and X @CBCN. If you look at our website and our network, you will also be able to connect with me. I’d be happy to answer any questions.
Lorie Spence: Well, thank you very much, Cathy and we thank you for joining us today. We look forward to following you on your journey on social media.
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