We are pleased to note that we – the Atlantic Cancer Consortium Patient Advisory Committee (ACC PAC) – have just published our 2nd scholarly paper!! 💓
In this paper, we describe our experience with organizing a Public Conference on Precision Medicine (March 15, 2025) for Atlantic Canadians, self-reflections, feedback received and lessons learnt for future public partnerships and conferences
Take a look!!
What an impressive track-record – The ACC PAC was formed in Jan 2024, and this is our second manuscript peer-reviewed and published freely available to global audience
Congrats everyone – hope more to come!
Category: Blog
New study on patient-partner experience is recruiting!
We are conducting a pilot study on patient and public partnerships in Newfoundland and Labrador!
Please see the poster below – if you are interested in participating in this study, please proceed to the link for further information and participation: https://mun.yul1.qualtrics.com/jfe/form/SV_4ZpWYf6SqoLk4vA
A couple of definitions from the link:
For this study:
 • Patient means that you are someone affected by a health issue. A caregiver or a family member of a person with a health issue is also called a patient.
• Public means that you are a member of the general public. You may or may not be a patient.
• Partner means that you are a part of a team. This team may be conducting a research study. Or, it may be designing and delivering an initiative, such as a program, planning session, consultation session, townhall, or public engagement event.
Other terms can also be used to define partners. For example, they may be called an advisor, council member, project team member, interest group member, or committee member.
• As a patient and public partner in the team, you work together with other team members. You may have equal rights or responsibilities for the work done together.
Community report for 2025 by the Public Interest Group on Cancer
Happy 2026 everyone!
Here is a little summary of our accomplishments for the past year – hope you will enjoy this video clip.
We wish you a wonderful 2026!
Sevtap
We have a logo!
Dear folks,
We are pleased to share our group’s logo with you!
We loved how it shows togetherness and feeling of community that we have been experiencing and seeing around us.
Happy New Year!
©Public Interest Group on Cancer.
Cancer and young individuals: An advocate’s point of view
I am pleased to share with you my pre-recorded speech delivered as part of the Canadian Cancer Research Alliance conference (CCRC) held in Calgary, Canada between Nov 2-4, 2025.
Sadly I could not make it there in-person, but I am glad I had a prerecorded speech that could be played during the session.
You can access it here freely.
Better days ahead.
Sevtap Savas, Nov 5, 2025, St. John’s
Exceptional Leadership in Patient Involvement in Cancer Research Award
I am excited to note that I will be receiving the Exceptional Leadership in Patient Involvement in Cancer Research Award by the Canadian Cancer Research Alliance (CCRA) in Nov 2025.
Congratulations to all awardees – what a great cohort of folks who are dedicated to make a difference at the cancer front!
I am so happy to bring this Award to Newfoundland and Labrador, and Atlantic Canada.
This prestigious and national award goes to you folks: Community in #NewfoundlandAndLabrador and in #AtlanticCanada, my collaborator colleagues and assistants, and our funders who transformed me into a public communicator and engager.
Over the last 6 years, together we have been working very hard to make a difference in the lives of people, families, and communities affected by cancer.
The Public Interest Group on Cancer Research has been particularly strong voice in Newfoundland and Labrador. It was formed and sustained by funding provided by the Office of Public Engagement in St. John’s, Memorial University of Newfoundland. Sadly, this wonderful unit, its excellent staff, and its funding do not exist anymore. This is just one example of how the budget cuts impact the community in NL – no one wins here.
The Atlantic Cancer Consortium Patient Advisory Committee is another successful partnership albeit being a young one (formed less than 2 years ago). I thank our funders/MOHCCN for making our work and committee a possibility.
NLSUPPORT has always been there to give us a hand – I cannot thank its wonderful staff.
Among all the units I am associated with at Memorial University, it has been my clinical colleagues at the Discipline of Oncology, who have fully supported and understood what I have been trying to do in my engagement work. Special thanks go to them.
I thank Quality of Care NL for nominating me for this award, and public partners, leaders, and colleagues supporting my nomination.
I always question where my heart and mind are. Nowadays they are with my family. My mom, Nimet Altunbas, died of cancer four years ago. My sister, Mehtap Savas, is a long term survivor of cancer. I would die for them.
I work very hard to make a difference in the lives of people affected (or will be affected) by cancer – I have no regret for working hard, failing, getting up, getting burnt out, and succeeding along the way. My only regret is that my family has not benefited and will not benefit from my hard work. From my young age on, they supported my ideals and not even once complained about me being away from them (since age 11). I proudly note that my sister Mehtap is my biggest supporter, as she understands the gap we have been addressing together with public partners in the lives of people affected by cancer.
Last, I am Turkish and I am an immigrant to Canada. This award is a testament to immigrants’ abilities and contributions to the society and academia in Canada. If there are other immigrant folks out there who would like to start public and patient engagement, please just go ahead – future is brighter.
My commitment to make things better for the next person and family affected by cancer is continuous. Please join me in supporting them in any way you can.
With gratitude
Sevtap Savas, PhD. Oct 21, 2025 St. John’s
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In case you are wondering what we have been doing with public partners, here is a short summary
- We have been spending a lot of time creating ideas, figuring out, conversing, and overcoming hurdles to do so
- We have been reaching out to the public, engage with them, and share knowledge with them
- We have been designing studies and public engagement activities to benefit the public
- We have been advising researchers and other stakeholders
- We have been organizing public events and conferences
- We have been publishing all learnings at both the academic and public levels, so that anybody could benefit from our experiences
- We have been learning how to best work together
- We continuously progressed and evolved – we even started a public podcast on cancer with currently 28 episodes!
You can read my full award interview here: https://www.ccra-acrc.ca/wp-content/uploads/2025/10/2025_Interview_SSavas_EN.pdf and listen to a snap shot of it in the YouTube video below.
Immigration Matters: Fighting for better cancer care
Thank you Government of Canada, Immigration and Citizenship for this wonderful opportunity & recognition.
If we can get together, there is nothing we cannot achieve. One day, we will eradicate this disease called cancer.
Thank you Canada, Newfoundland and Labrador & patient partners for adopting me, making me one of yours and giving me the conditions to become something I have never imagined of.
Better days ahead for all of us.
Advocating to House of Assembly_Newfoundland and Labrador
Advocacy is something we naturally do when we partner with public members.
Pleased to advocate on behalf of people affected by cancer in Atlantic Canada by emailing the following to all 40 members of the House of Assembly in Newfoundland and Labrador:
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Dear Members of House of Assembly – Newfoundland and Labrador,
Cancer touches everyone.
When it strikes us, or someone close, we know that they need support, and we all want to help.
As an elected representative, your role is crucial, and your actions can save lives.
The Atlantic Cancer Consortium Patient Advisory Committee (ACC PAC) is part of the national Marathon of Hope Cancer Centres Network. Our membership includes 15 members from Atlantic Canada, 11 of whom are public members affected by cancer. I proudly lead this group.
Together, ACC PAC has identified priorities to improve access to care, and has published an academic paper with their results – you can access it here free of charge: https://link.springer.com/article/10.1007/s44250-025-00201-1
We invite you to take a look at the priorities identified in our paper to explore ways to address them in our region, and reach out to us with suggestions about how you may be able to fast-track improvements.
We are happy to meet in person or virtually.
Thank you and kind regards,
Sevtap
Thanking Bev P. for her valuable help with the content.
Sevtap Savas, PhD, ACC PAC lead.
Letter to candidates in St. John’s East riding
Elections are excellent times to contact the candidates and advocate for the causes we are enthusiastic about.
This morning, to advocate for cancer-affected families and communities and to ask candidates to take action to help support them, I sent this letter to all four candidates in St. John’s East riding (Mary Shortall – NDP; Joanne Thompson – Liberal Party; David Brazil – Conservative Party, and Otis Crandell- Green Party).
One day, one letter, one contact at a time.
Better days ahead.
Sevtap Savas, PhD. St. John’s
Guest blog: “Cancer: Make a Good Nuisance of Yourself”
Guest Blog 8
By John Dabell
@John_Dabell
January 2025
England
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When you are told you have cancer then you probably don’t feel much like fighting. The initial shock and awe can incapacitate your whole being. Your senses simply shut down.
I was completely overwhelmed after I had been told I had incurable Stage IV head and neck cancer and probably had just two months to live. I couldn’t accept what was happening to me and felt numb to the core, desperately vulnerable and utterly pulverised.
I had already had a Stage IV head and neck cancer ten years before and I thought I was out of the woods. I’d been through hell then losing my tongue in a 15-hour operation followed by 35 rounds of radiotherapy and chemotherapy. They threw the kitchen sink at me and I survived but the collateral damage was life-changing: speaking, eating and swallowing were now major daily challenges and my jaw irreversibly damaged because of osteoradionecrosis.
But this time, I was told a different cancer had grown in my neck and it was incurable. Shock and awe quickly moved to shock and denial and then to shock and anger.
The first time I was told I had cancer I was the classic passive patient and just let the medical team get on with it. I turned up for appointments, I did as I was told and just towed the line. What else could I do?
Well, the second time around, I realised there was plenty I could have done differently. I could have asked more questions, I could have asked for a second or third opinion, I could have researched and been more pro-active. My experience up to this point was deferential, asymmetrical and unbalanced.
I’ve learned the hard way that as a cancer patient, you have to make a nuisance of yourself (in a good way that is!) to get heard and get noticed. On occasions, you have to be a persistent thorn in the side of a system that often doesn’t serve the best interests of patients. That might not come naturally to you but this is your life and if the system is letting you down in any way, you have every right to kick up a fuss. If your CT scan hasn’t been reported on for 3 months then you make what waves you can to get heard (and yes, this has happened to me!).
I’m not advocating painting placards and starting a riot on an oncology ward with fellow patients but I am championing being a self-advocate.
You have to be your own cancer champion and for that you have to be a polymath patient and be willing to go beyond the traditional patient expectations and the paternalistic model of the doctor-patient relationship.
You are not a passive recipient of healthcare, you are an active and equal partner in addressing your health and wellbeing. This means being active in the treatment of your illness and the recovery of your health. It’s about being a co-catalyst in your disease management.
Of course, you don’t have to fight your own corner because you may be fortunate enough to have others on your side willing to provide the back-up. Close family and friends are the natural foot soldiers here.
But not everyone has this option and even if you do, the pressure on your nearest and dearest can be heavy and exhausting. It is incredibly hard for them to shoulder the responsibility.
Other options are available such as a specialist cancer nurse and some patients even have a cancer doula to provide the sharp elbows when needed.
Clearly, you can’t go it alone all of the time, everyone needs a ‘wingman’ and everyone deserves a cancer champion but don’t be afraid to stand up for yourself and be your own support. A considerable chunk of the cancer experience is DIY.
Self-advocating as a cancer patient is the active process during which you recognise your worth and assume the responsibility of clearly communicating your needs, expectations and goals to others. How far you go is up to you and at the end of the day, it is a choice – you can be an advocate with an ‘uppercase A’ or a ‘lowercase a’ or let others do the advocating for you.
But don’t be afraid to ask ‘awkward’ questions. Your life is on the line, not the person sitting opposite you. Probe, discuss, negotiate and challenge. It is empowering and will feed your determination to live and help you take charge of your own health and wellbeing. We can make better decisions when we are well-informed.
Try not to be intimidated by the expertise of your doctors – they don’t know everything. They also hold speciality biases and epistemic injustice in oncology is not uncommon.
So, when it comes to a cancer consultation, find a new question that has never been asked before. Challenge the status quo and get everyone thinking outside the box. Your doctor’s recommendation might not be best for you.
Where you have surgery and who does it matters so ask whether you will be treated in a high volume hospital by a high volume surgeon. When it comes to treatment, ask what the current treatment guidelines recommend for patients with your stage of cancer and who checks.
This sounds confrontational and sometimes it is because it has to be to get heard but for the most part self-advocating is a way of promoting mutual participation and equal power. You can help to foster further discussions and new approaches by being a good nuisance!
To stay alive and thrive, you do what it takes so you become creative, you get busy and start to research, cover new ground and uncover new thinking. Through self-advocating, you speak up for yourself, your interests and anything else that is important to you and this can lead to patient-driven quality improvement different across systems.
Always remember that you are a champion and it your voice and experience matters. You can be a change agent not only for yourself but many other cancer patients. Time to pull the lever, know your worth and stand up for you because it is all part and parcel of good cancer citizenship.
