The new questions I am working on. I know someone out there has the answers.
Feel free to comment or email me at savas{at}mun.ca.
Thank you.
Sevtap Savas, PhD. Sept 20, 2023, St. John’s.
We would like to be a part of bigger solutions
Category: Public Interest Group on Cancer Research
Public Interest Group on Cancer Research made two presentations in a national academic conference!
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!
Project end report for stakeholders: Development of a community engagement & outreach strategy on cancer
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”.
This is a project that was designed by the Public Interest Group on Cancer Research.
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.
Sevtap Savas, PhD. On behalf of the Public Interest Group on Cancer Research, Sept 7, 2023.
*revised on Sept 12, 2023 regarding “Affiliations”.
Public Interest Group on Cancer Research published their 2nd scholarly manuscript!
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 check the paper – it is freely accessible here: https://journals.lww.com/jporp/fulltext/2023/07000/designing_and_delivering_public_engagement.6.aspx
You can also check this Saltwire article for a lay and short summary of this paper: https://www.saltwire.com/atlantic-canada/opinion/letter-nl-patient-scientist-partnership-continues-to-create-scholarly-knowledge-on-cancer-and-public-engagement-100887355/
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
PS: quotes from Savas et al. Journal of Psychosocial Oncology Research and Practice 5(3):110, July-September 2023 https://journals.lww.com/jporp/fulltext/2023/07000/designing_and_delivering_public_engagement.6.aspx and may have been modified only to fit to the text
NEWSLETTER – Public Interest Group on Cancer Research – 2022
We are pleased to report back to our community!
Please see the Newsletter below for our goals for and main achievements in 2022!
We wish all of you a wonderful Holiday Season and Happy New Year.
On behalf of the Public Interest Group on Cancer Research, Sevtap Savas.
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.
Our manuscript describing the creation, aims, and work of the Public Interest Group on Cancer Research has been published :)
Last weekend was a very proud time for us – our manuscript describing the creations, aims, and the work of the Public Interest Group on Cancer Research is now published in a peer-reviewed, open access, and international journal 🙂
You can access it here: https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-022-00380-8
Very exciting experience. My first time authoring a scholarly article together with this team and patient partners 🙂
We not only engage with our community members/patients, work and advocate together with them, but also contribute to the scholarly field of patient engagement – that is so cool 🙂
Until next time.
Sevtap Savas, PhD. Sept 9, 2022, St. John’s, Newfoundland and Labrador
Presented the work of Public Interest Group on Cancer Research in an international congress (IPOS/CAPO 2022)
So excited to have represented and presented the Public Interest Group on Cancer Research in the International Psycho-Oncology Society / Canadian Association of Psychosocial Oncology (IPOS/CAPO) 2022 Congress!
This is a joint congress held between IPOS and CAPO between August 29-September 1.
I truly enjoyed listening to talks from all corners of the world and disseminating information about the Public Interest Group, how we created it, why we created it, and what we have been achieving since its inception.
I thank all past and current members of this group for their contributions!
You can check the #IPOS2022 to see tweets about the congress and talks.
I will be talking about the importance and work of this interest group during the Public Conference on Cancer, October 15. Please join us to hear more.
I also plan to record a talk and make it widely accessible for anyone in our province. Stay tuned.
Until next time, Sevtap Savas, PhD. Sept 1, 2022 St. John’s, Newfoundland and Labrador
Cancer patients and family members are very effective story tellers and public educators
We have been generously disseminating our work generated as the Public Interest Group on Cancer Research through a variety of ways. Recently, we have had three radio interviews.
These interviews are excellent opportunities to hear our members affected by cancer (patients or family members from NL), and their opinions, experiences, perspectives, and motivations when it comes to cancer and being a member of the Public Interest Group. Their conversations were also great ways to raise awareness about critical knowledge. For example;
- Effects of the pandemic on cancer patients and family members/loved ones
- Our members’ motivation to help other individuals going through cancer. We hear such powerful, genuine, and strong motivation from patient and family members over and over. I keep thinking and comparing them with others that often speak on the public venues. Do you also think that they have no hidden agenda or financial benefits to gain, like corporations or politicians? That they have genuine interest in improving someone else’s life and wellness? That they have no intention or make no attempt to manipulate for personal gain?…. The only personal gain would be the happiness/satisfaction coming out of knowing they did help someone go through cancer journey a little bit easier, or helped them prevent or early diagnose their cancer?
- Our members’ experience with disease symptoms, and importance of early diagnosis and cancer screening programs. They mentioned multiple times that if tumors can be diagnosed when they are small, then treatment options are wider and more effective, and patients can have a chance of being cured. There would be also more chances of spending time with their family members/loved ones
- Our members’ experience with familial/hereditary cancers, and how genetic knowledge have lowered their cancer risk through clinical management and screening (that is, specifically looking for any abnormality or pre-cancerous tissues). Knowledge is power – knowing our cancer risk can inform us and our physicians, and help take steps to prevent cancer developing in our bodies
- Our members’ experience with wonderful/attentive physicians, nurses, and Provincial Cancer Care Program services, including the patient navigator program
The last one shows very nicely that while we do have issues, needs, or things to fix, luckily, we also have great people and services available to (at least some of) us in cancer care.
Note that the patient and family members affected by cancer have two things that we – researchers, policy makers, healthcare providers, administrators, and so on – often do not have:
1. The lived experiences
2. The ability to tell a story, capture the attention of the audience, and convey important messages like those noted above in a way that anybody can relate to or understand
Knowledge.
Skills.
Genuine interest to help others.
Our patient and family members affected by cancer do have these. These are why I think they are the best public educators I have ever witnessed so far.
Please feel free to listen to what our members say and let us know what you think:
CBC Crosstalk with Bernice Hillier (starting around 16th minute)
The Wahl Show with Dr. Mike Wahl
CBC Morning show with by Ramraajh Sharvendiran
Until next time,
Sevtap Savas, PhD. June 18, 2022, St. John’s, Newfoundland and Labrador
Proudly presented The Public Interest On Cancer Research in a national conference last week!
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