We are pleased to air our new podcast!
In this episode, Janine Taylor Cutting an Sevtap Savas talk to Lisa Ridgway, a powerful patient partner and leader from British Columbia
Together, they dissect what patient-oriented research means and how we all can contribute to this meaningful research strategy
#NewfoundlandAndLabrador#PatientLeaders#PublicEngagement#PublicOutreach#StrategyForPatientOrientedResearch#podcasting
We are pleased to let you know that we have started the process to formally start the Patient Advisory Committee of Atlantic Cancer Consortium!
Atlantic Cancer Consortium is a part of the Marathon of Hope Cancer Centre Networks led by the Terry Fox Research Institute. This consortium consists of a team of over 70 scientists, clinicians, staff, and trainees in Atlantic Canadian provinces.
The primary aim of the Cancer Centres Network is to advance the way to cancer cure via research (particularly focusing on Precision Medicine), collaboration, and training the next generation cancer researchers.
ACC PAC will be led by Sevtap Savas, PhD. Sevtap is a cancer scientist, patient advocate, and professor at Memorial University of Newfoundland and Labrador, St. John’s, NL.
Stay tuned!
After 2 years and 3 months of working together, sadly the ACC PAC (Atlantic Cancer Consortium Patient Advisory Committee) is coming to an end due to lack of funding. During this time frame, our committee worked tirelessly to connect patient stories, scientific and medical knowledge, and priorities with the general public, scientists, clinicians and funders.…
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…
The Atlantic Cancer Consortium Patient Advisory Committee (ACC PAC) is proud to note that it has started its webinar series. In the first two webinars, the committee focused on the research done by the Atlantic Cancer Consortium. The first webinar was delivered by Dr. Alexi Surette in French and the second one was delivered in…
My colleague John King and I were speakers in a workshop session yesterday that aimed to convey messages and tips about science communication and patient partnership.
It was an amazing one hour that was not enough. We had great perspectives shared and great questions asked by the audience, who were mostly trainees from across Atlantic Canadian post-secondary institutions. Hope we will have other opportunities to continue this vibrant conversation.
John provided his insight and perspectives, which was the most interesting and exciting part of the session. My part of the talk was an extension of a smaller presentation I delivered earlier.
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One question that left a mark in my mind was whether there was really an option for patient partners to contribute to bench/lab studies.
Around 5 years ago when I first started thinking about patient partnership, I thought about the same thing.
I thought “No way”. No way a patient partner can contribute our experimental design or interpretation of results. I was naive to think that there was no other way that they could contribute to our research. Maybe there is not – it is tough sometime, you know?
Over years, I have changed my research interests, partly because I started to partner with public members.
Now, we design studies together based on their priorities. Some partners are actively involved in improving our proposals and how we conduct studies. They bring new perspectives to our understanding. These are mostly non-lab studies, so it is easier for me to partner with and actively engage patient or public members in our studies.
What I suggested the trainee who asked this question was to challenge this and give it a try. I am curious about how their experience would be like.
In the meantime, this valuable question also made me envision a society where the distinction and division between the academics and public were gone. No more academic Ivory Towers. No more “Only I know what is right and wrong” kind of patronizing attitudes. How about we open our minds to everyone in the worldwide community and welcome them to contribute to academic endeavors?
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The term “patient partner” or “public partner” is reductive. These terms restrict the qualities of these individuals to only their condition or public-related experiences. This is not right.
We have so much to learn from each other.
We can create one universal university by working together.
Imagine how rich would our understanding and outreach would be like. How empowering and creative.
Citizen science is something I watch carefully I believe it has a great role in increasing science (and in my case, health) literacy. I think science is for everyone and if we try, we can find ways for everyone to enjoy science and have a society with a scientific base.
Hope you are interested in citizen science and public/patient partnership. Give it a try.
Sevtap Savas, PhD. St. John’s, Newfoundland and Labrador, Oct 14, 2023
We are delighted to note that our group has made two presentations at the The Canadian Centre for Applied Research in Cancer Control (ARCC) Conference (Sept 14-15, 2023)!
The titles and authors of these presentations are:
1. Partnering with patient advisers in designing and delivering public engagement events on cancer. Sevtap Savas, Alicia Follett, Holly Etchegary, Cindy Whitten, Namiko Sakamoto, Janine Taylor-Cutting, Jason Wiseman, Derrick Bishop, John King, Tristan Bilash, Teri Stuckless.
2. The Public Interest Group on Cancer Research – The 2022 Update. Sevtap Savas, Holly Etchegary, Cindy Whitten, Alicia Follett, Namiko Sakamoto, Janine Taylor-Cutting, Jason Wiseman, Derrick Bishop, John King, Teri Stuckless.
You can find the recording of the 1st talk here:
Our group will continue to produce public and scientific knowledge AND disseminate them for access by anyone locally, nationally, and globally.
We thank our funder (Office of Public Engagement at Memorial University) and supporters (NLSUPPORT) for giving us a much appreciated support to grow our group’s activities!
Here is a mini talk I prepared for the Canadian Cancer Society’s Emerging Scholar Research Grants – Equity, Diversity, Inclusion and Patient Engagement Workshop, Expert Mini-series.
Hope the new investigators all will feel a little bit more comfortable and knowledgeable after this great session today.
I have more to say about the tips and recommendations about how to best work with our valuable patient partners, but this is a great start!
Happy to note that I presented the creation, work, and characteristics of the Public Interest Group on Cancer Research in the Canadian ARCC (Applied Research and Cancer Control) Conference held early last week!!
This was our first presentation of our highly successful group in an academic/scientific setting. I could not be prouder and excited to tell the conference attendees about our work, aims, and achievements while also addressing their questions (one attendee was very interested in learning more about the research study and public outreach activity that the group developed – scientists and public members together).
It is always a great feeling to be able to talk about our work, disseminate knowledge and experience, and see where we are and what else we can do by getting fresh perspectives.
Thanking the conference organizers for giving us this chance; MUN’s Office of Public Engagement for funding this initiative, and NLSUPPORT for supporting our activities!
I would like to thank each member of this group for their dedication, work, and motivation. You all are rock!
Until next time,
Sevtap Savas, PhD. May 27, 2022 St. John’s, Newfoundland and Labrador