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.
Information, Membership Conditions, Screening Process, and Consent Thank you for your interest in the Marathon of Hope Atlantic Cancer Consortium (MoH ACC) Patient Advisory Committee. Please read this document carefully. If you have any questions, please contact Dr. Sevtap Savas, Division of Biomedical Sciences, Faculty of Medicine, 300 Prince Philip Drive, Room 5M324, St. John’s,…
Incidence of some cancers have been increasing in young individuals. Colorectal cancer is one of them.
Since often times cancer is considered a disease affecting the older folks, this new trend may mean that some young folks are not suspected to have cancer and as such their symptoms may be dismissed at the clinic, leading to delayed diagnoses and late stage diseases.
I talk about this a bit here in this short video – take a look:
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!
We are very pleased to share the Project End Report for our latest Public Engagement project entitled “Development of a community engagement and outreach strategy on cancer”.
The project leads include John King a public member and Sevtap Savas, a researcher.
There is useful knowledge for all stakeholders, including communities, researchers, healthcare providers and administrators, and governments. Take a look.
What a pleasure to share with you our new scholarly manuscript on lessons learnt, experience and perspectives gained as a result of the Public Conference on Cancer (Oct 15, 2022)!!
This conference was organized and delivered by the Public Interest Group on Cancer Research. I strongly believe that the public members of this group were crucial in making this Conference truly meaningful.
So, what do we describe in this paper?
Key points can be summarized as follows:
– “Participant feedback was overwhelmingly positive“
– More than 95% of the 52 feedback providers said that “The session was presented in an understandable manner” and that “I learnt valuable information in this session”
– “The most impactful/valuable parts of the conference identified by the survey participants were the patient stories and talks“
Am I surprised? Not at all; These were real folks, real stories. It is impactful.
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We also learnt about how the conference participants heard about the event:
– It was mostly social media and Memorial communication channels.
This is good to know, as we know we have work to expand these, so that we can reach out to more folks in NL.
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This Conference also helped us the Public Interest Group on Cancer Research increase our skills as conference organizers, moderators, and speakers. We really loved this experience, but the contents of this Public Conference on Cancer were also impactful on us.
-“Some of us felt hope for others who could benefit from the information shared during the Conference but at the same time felt guilty too that if the information was out/accessible earlier, it could help their loved ones who were lost to cancer“
That was me.
To date, I still feel guilty That I could not help my family members and friends as much as I could, as a cancer researcher. The pain I feel is nothing like I know. Please know your rights and risks, and protect yourself from cancer.
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The Public Interest Group on Cancer Research and I try very hard to bring useful knowledge on cancer prevention, early detection, and support to you.
We need your support to change things for the better. It will be the residents who will change things here.
We try everything in our power, by disseminating knowledge and our work in public and academic environments. We have local and global presence. But, how do we get the attention of local decision-makers?
Sometimes I feel like I keep hitting my head on that wall we call “silos”.
But luckily then I remember power of people and motivation given to us by the cancer patients and families, and I gather my strength I try and try and try.
One day, it will work out.
People have the power, not the systems or governments. We can change things for the better. I believe in this. I will keep trying.
NOBODY can say that I have not tried.
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Going back to paper, I wanna emphasize 2 points on patient speakers:
– Speaking about cancer can lead to emotional impact. So we had one patient speaker recorded their talk. We got one criticism about this – please understand that sometime it is necessary.
– The 2nd point is that sometimes speakers could not share their conference presentation materials publicly – we present these reasons on the paper. In one case it was because it could harm “personal safety of a patient speaker”.
We all are learning – so join us in this process. We will continue to provide a safe environment and conditions for patient speakers and speakers from vulnerable communities.
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There are many great points made, lessons learnt, and perspectives gained by organizing and delivering the Public Conference on Cancer We are beyond proud that we share these with you and globally in this scholarly paper.
Please remember to take great care of your health and do not be shy to demand better conditions, knowledge, resources, and services to protect and care for your health you deserve it.
Until next time,
Sevtap Savas, PhD. St. John’s, Newfoundland and Labrador, Sept 4, 2023
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!
We should ask these questions to understand the lived experiences of individuals with a history of cancer.
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Cancer-associated stigma is a form of depreciation of the individual because of their cancer diagnosis.
Stigma can be defined as unfair and unjust treatment of individuals because of a feature (in this case, cancer).
Cancer-associated stigma does not always happen, but when it happens, it can transform into discrimination.
It is a social justice issue.
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Cancer-associated stigma can be fueled by misconceptions, myths, misperceptions, and fear.
For example: not all cancers are caused by smoking (though it is a significant risk factor). Another example: Gynecological/anal/colon cancers can be a subject of taboos/myths because of their locations in the body.
Making assumptions of the individuals in social/familial as well as workplaces can stigmatize them too. For example; trying to make decisions on their behalf; not providing the same opportunities as before.
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While we all wanna support the cancer patients, why do we stigmatize or discriminate them, then?
In most cases, it is unintentional.
Sometimes, it is the “business model” – for example, in the case of insurance companies.
In our study we found that friends were the leading source of stigma in the NL population.
Why?
We do not know, but one hypothesis is that they do not how to interact with patients or they feel fear.
In our study, in terms of discriminations, insurance companies/banks and workplaces were the leading source in our study.
Policy changes and extra financial protection for cancer-affected persons needed.
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We may get uncomfortable when someone we know/dear get a cancer diagnosis.
But we can move beyond this fear & do what we wanna do – support the patient in a way that they want.
Communication is key.
Cancer is a challenging disease and support we can get at that time can be crucial.
Lack of support as well as stigma and discrimination can negatively affect the health and quality of life of the persons diagnosed with cancer. They can also affect their financial well-being
These are opposite of what we, healthcare system, governments & cancer organizations are trying to do.
So let’s take a moment to think, read & contemplate about how we treat & interact with cancer patients.
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In our study, some of the questions we asked participants to measure cancer-associated stigma were the followings:
“I feel guilty because I have/had cancer”
“I feel set apart, isolated from the rest of the world because I have/had cancer”
“I stopped socializing with some people because of their reactions after learning I have/had cancer”
I believe that we all have a role in erasing cancer-associated stigma, marginalization, discrimination, and unfair treatment of individuals with a history of cancer.
Being aware of the stigma experiences, as we have done in our study, is a great start.
But we need to move beyond awareness & act on cancer-associated stigma and discrimination so that the individuals diagnosed with cancer are not extra burdened.
Join us in this journey!
We will continue these conversations over time. Our job has just started.
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I thank my colleagues involved in the study (Drs. Teri Stuckless, Eric Tenkorang, Charmane Simmonds, and Ms. Mercy Windsor), all participants, and the funders (Memorial University – Disciplines of Genetics and Oncology; Beatrice Hunter Cancer Research Institute) for making this study a possibility and Dr. Cataldo for giving is the permission to modify their stigma scale for our study.
