Category: Blog
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This Is Our Conversation Series_Introduction
Introduction to “This is our conversation” series by Sevtap Savas, PhD. This series aim to exchange knowledge on cancer.
if you have any comments or questions, you can contact her at savas[at]mun.ca or at 709 864-6507
Disclaimer: Information is shared for the purposes of education and sharing information/perspectives only. The information posted should not be interpreted as medical advice. All health information should be discussed with your health care provider.
MUN Research Week webinar on Public Engagement & Research
Grateful for Office of Public Engagement for organizing this webinar and making the recording publicly available!
I truly enjoyed being a part of this event, listening to my colleagues, and addressing participant questions.
Take a look!
Till next time,
Sevtap Savas, PhD, St. John’s, Newfoundland and Labrador
Thoughts on Public Engagement – Part I
I was one of the panelist today in Memorial University’s “How Public Engagement Makes Research Better: A Research Week-Engage Memorial webinar“, a public event organized as part of the Research Week.
I loved being in this panel, listening to participants and other panelists, and addressing questions and comments.
Reflection – naturally – has ensued.
I am new to undertaking significant roles in public engagement. My first idea materialized in 2019, with a Quick Start Fund I received to organize the Public Conference on Genetics in 2020. Once I realized how impactful and successful this event was, there was no returning back for me.
In the following year, I created the Public Interest Group on Cancer Research, together with other founding members. It has been going successfully since 2021. We are a new group, but we are a mighty group.
So far, we have identified the key interests and priorities of the cancer community in NL; organized a very successful Public Conference on Cancer; published a scholarly article in an international, peer reviewed journal; presented our work in two scientific conferences; and disseminated knowledge and advocated for others going through cancer via our website, local media interviews and articles. We also designed a research study based on the identified priorities, which awaits for funding.
When I was asked what was the most impactful gain by the public partners in our group so far, two things came to my mind:
- to be heard
- to help others going through cancer
What else, I wonder? One thing that I may want to ask our patient partners.
There was also a question about how public engagement has changed my research.
Public engagement did change how I do research a lot! 🙂
I now focus on what is most important for patients and families, not what I think are important for them.
The individuals affected by a condition or situation are the experts of the lived experiences. For example, in cancer, cancer patients, caregivers, and family members they know how it is to live with the cancer diagnosis, treatment, trajectory, or end of life. Their partnership and stories have given me quite an insight.
Thinking that we as academicians, researchers, clinicians, or leaders know what is best for our patients, we are probably wrong. I also find it patronizing now.
In terms of how we approach communication regarding cancer has been also influenced by our partners. One patient partner said something along these lines that I always remember: “We should have hope that one day there will be a cure for cancer”.
Bringing hope and emphasizing the tremendous progress in cancer control and treatment is one thing that I integrate in my knowledge dissemination activities and interviews. It is a very powerful approach, considering that cancer is often a feared disease. We all need some hope that one day this disease will lose its power over us – it will become curable, less impactful, and less fearsome.
The Public Interest Group on Cancer Research meshes public engagement and patient-oriented research elegantly.
I am so happy for this and I am so proud of being a part of such a powerful public partnership. Together with 13 cancer-affected public members and three of my colleagues, we diligently and enthusiastically work to improve things, lived experiences, and conditions of cancer families, starting in our province.
Sevtap Savas, PhD. St. John’s, Newfoundland and Labrador, Nov 22, 2022
– To be continued –
Guest Blog: “I had high hopes for simplicity, good news, and most importantly good information”
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Guest Blog Post – 2
By Mike Warren
October 2022, Newfoundland and Labrador
There are numerous stories, facts and figures about cancer and its impact on people, including their families and friends. While we might want to wish cancer away or ignore it, that’s not the best approach. We should learn about it, talk about it, and take action to be ready when it arrives at our door. And in one way or another it will arrive. That is why I attended the Public Conference on Cancer.
The conference was organized by the Public Interest Group on Cancer, led by Dr. Sevtap Savas a professor in the Faculty of Medicine at Memorial University. Held on October 15, 2022 it included presentations on topics such as cancer care, hereditary cancer, childhood cancer, and cancer screening. Other topics included social, financial and other support services for individuals affected by cancer.
Let’s face it, most of us have experienced, or will experience, the pain and grief of cancer. It could happen to a mother, father, sibling, niece, nephew, or a friend. The list goes on. Cancer hits hard when it’s someone you love – or it’s you. My sisters have beaten it. They are among the first people I know who benefitted from an early diagnosis. My beautiful niece fought very hard against triple negative breast cancer, but lost her fight at the age of 36. She left behind a grieving family including two young children. Other people special to me continue to fight.
To better understand what drew me to the Public Conference on Cancer, I need to say a bit about my perspective and interest. While I have not had a cancer diagnosis, I’m being monitored for prostate cancer; the blunt reality for men over 50. Over the last few years, I’ve also learned through personal experience about the risks associated with Cancer Predisposition Syndrome (CPS). That’s a scary title! It means that people can have a greater risk of developing some cancers because of a mutation in their gene structure. It’s part of their heredity – past and future. My gene mutation is RAD51C which I’m still trying to get my mind around. I also participate in the FIT screening program for colon cancer.
Finally, and important for me, I’ve had the wonderful experience of being a Patient Partner in healthcare research on genetic-related cancers, among other topics. I’ll use this opportunity to thank the good people at NL SUPPORT and my colleagues on their Patient Advisory Council. Through their help and guidance over the last six years, I’ve increased my knowledge of health and healthcare research.
Having attended many conferences over the years, I find that you never quite know what you will get when you sign up. This is particularly true for healthcare and medical conferences. For a lay person, some presentations can scramble your brain with medical terms, jargon, and academic research findings and processes. But the word “public” drew me to this one. I had high hopes for simplicity, good news, and most importantly good information. I got it. Many thanks to those who brought their personal stories; some with heart-warming passion, and some with pain and grief. Those stories will stay with me for a long time. Personal note: when you attend a conference on cancer, you have to accept that it can trigger memories of grief, sadness, and even anger. It did that to me.
Based on my perspective, I learned many things from the conference. I emphasize that these are things I learned. I’m sure everyone took away their own memories and learnings based on several factors, including where they live, their culture, gender identity, and their own cancer experience – positive and negative. I hope everyone took away information they can use in their lives.
Here are the top five things I learned:
1. Cancer patients and their families have to be their own advocates for diagnosis, treatment and support. You can’t rely on others to do it for you.
2. Cancer patients are not alone! There are many healthcare professionals to help patients and their families with their needs, including physical, social, and spiritual. Government and non-government programs, services and other resources are also available.
3. Two important areas of cancer research are early detection, and the role of gene and genomics in cancer (e.g., CPS).
4. Cancer screening is critical for early detection and treatment especially breast, colon, prostate and cervical cancer.
5. Don’t pass off symptoms. Talk to a healthcare professional about them.Â
Thanks to all those who organized, participated in and funded the conference. A special thanks to those who shared their personal stories. While it might not have been easy, please know that it added greatly to the value of the conference.
I hope these public conferences continue. After all, knowledge is power. We all need to be ready when cancer comes to our door.
Thanks for reading. Have a great day!
Disclaimer: Guest blogs are the purposes of education and/or sharing perspectives. The information shared by bloggers should not be interpreted as medical advice. All health information should be discussed with your health care provider.
Public Conference on Cancer – select recordings & presentation materials
We are pleased to post select recorded talks and presentation slides that are used to exchange knowledge during the Public Conference on Cancer.
Please click on the links below to access the presentation materials. Thank you for your interest!
JASON WISEMAN. A brother’s tale
HOLLY ETCHEGARY, PhD. Canada’s Strategy for Patient Oriented Research (SPOR): Putting patients first
DERRICK BISHOP. Personal impact of hereditary cancer – My story
SEVTAP SAVAS, PhD. The work of Public Interest Group on Cancer Research
Note: Conference materials (video recordings, presentation slides) are posted with the permission given by their creators (copy right holders). This website and its owner has no rights to or responsibility regarding the contents of these materials.
Disclaimer: The conference materials are shared for the purposes of education and sharing perspectives only. The information shared by presenters should not be interpreted as medical advice. All health information should be discussed with your health care provider. Organizers, funders, and supporting organizations are not responsible for any misinformation that may be shared.
Guest blog: “The more I expand my knowledge the more I also understand that there is hope”
Pleased to introduce you to our first guest blogger, who wishes to remain anonymous but is happy to share their thoughts as someone affected by cancer.
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Guest Blog Post – 1
September 2022, Newfoundland and Labrador
Cancer has affected my family in so many different ways. I am fortunate enough to say I have never had cancer, but I cannot say it hasn’t affected my life.
When I was roughly 13 years of age, my family received news that no family wanted to hear. My mother was diagnosed with kidney cancer and was about to be sent to St. John’s for surgery. I really did not understand, even though I was 13. It was very difficult to wrap my head around. I did not understand why it was happening either. That same year, my mother’s uncle, my great uncle, was also suffering from cancer. We were very close with him. He unfortunately passed in 2015. I am very fortunate to have my mother, my largest supporter and best friend by my side today, cancer free. There are many people in this world who aren’t as lucky.
With cancer affecting my family in so many ways, I decided a long time ago that I was going to help make a difference. I have participated in the Relay for Life, I have joined a wonderful public interest group on cancer, and I have tried to educate myself on the concept to the best of my ability. Cancer is, without a doubt, something that we fear. It has a massive impact on the individual, as well as their family and friends.
The genetic makeup of cancer is something so complicated that many cannot begin to understand; it’s a disease that has been taking lives for over 3000 years, as the first documented case of cancer is from around 1500 BC. It is also very likely that cancer has always been around, and this is just the first documented case when people were beginning to understand. Around 360 BC, Hippocrates deemed the disease to be termed carcinoma, then in later years the English termed it Cancer.
I do as much research as I possibly can, and I always ensure it is coming from a trusted source. 50% of people in Canada will be diagnosed with cancer in their lifetime, and 25% of those will pass away from cancer. As of today, there is no set cure. There are prevention measures that can be taken, as well as treatment, such as chemotherapy and radiotherapy. But prevention is better than treatment. The prevention measures that can be taken such as wearing sunscreen in the sun, eating healthy, remaining active, getting vaccinated, are just some of the ways you can reduce your risk. In saying this, sometimes cancer just occurs even with all these measures being taken. Always remember to live a healthy life, as well as a happy life, as tomorrow is never promised. Sometimes even if you do all these things and more, as my mother did, you can still obtain the unfortunate diagnosis.
I explain all these different facts for the sole purpose of understanding. I truly believe that educating ourselves on this topic can result in a small decrease in risk. I believe that educating ourselves about anything, especially things that scare us, has benefits.
Cancer was something that since I was a young child, frightened me. However, the more I expand my knowledge the more I also understand that there is hope. There is hope to not only decrease risk, but the hope for a cure and to find more methods of protection.
Disclaimer: Guest blogs are the purposes of education and/or sharing perspectives. The information shared by bloggers should not be interpreted as medical advice. All health information should be discussed with your health care provider.
Public Conference on Cancer was successful!
We have had a vibrant and interactive day of a public event on Saturday the 15th!
Thank you everyone who has joined us, all speakers, organizing team, tech support by OPED staff, and funders-supporting units (Office of Public Engagement, Discipline of Oncology at MUN, and NLSUPPORT) – without your interest and support we could not make these connections and have these important discussions.
Public Conference on Cancer was a patient-oriented Public Conference, meaning our focus was to bring the patient and family side to the table and support their experiences with what research says, and what clinical services and philanthropy offer in the province.
We also aimed for interactions and sharing knowledge among the participants.
I am happy to say that we have achieved these on Saturday.
You can find the live-tweets here by the Conference coordinator, Alicia Follett: https://twitter.com/savaslab/status/1581238231453966337
Alicia has done a fantastic job introducing our event and speakers, and disseminating the key messages distilled out of speaker talks.
We have had around 175 – 185 participants/registrants for the event and we continued to get emails for registration request during the day – thank you for your interest.
We were able to deliver all scheduled talks.
I felt the room feeling energized and excited after the Conference. I knew deep down that we have changed, initiated, or promoted something great that day.
Interactions and knowledge exchange between cancer patients and families; members of the general public; healthcare authorities and providers; researchers and policy makers should be an ongoing commitment, should we wanna join our forces together in controlling cancer’s effects on our population.
Stay tuned for further updates, uploaded conference information/videos, and sample feedback we receive for the Conference!
Until next time, please take care of yourself, your family, and your community.
Sevtap Savas, PhD. St. John’s, Newfoundland and Labrador
Why are we organizing the Public Conference on Cancer (Oct 15, 2022)?
There are good reasons that motivate us and help us organize this public event – please have a look at this short video message (https://youtu.be/_xY6N6Yp_Ak).
For our community. With our community.
To register for this conference, please visit: https://www.med.mun.ca/oped/programs/4534
or contact me: savas@mun.ca; 709-864 6507
See you in the Public Conference on Cancer!