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.
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.
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
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
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;
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
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
We widely disseminate the work of this group for wider audience. For example:
We submitted a report to Eastern Health / Oncology/ Provincial Cancer Care Program leadership in Jan 2022.
One conference abstract is presented in the ARCC conference (ARCC: The Canadian Centre for Applied Research in Cancer Control) in May 2022 – see here.
The second abstract will be presented in the Canadian Association of Psychosocial Oncology 2022 conference (Sept 2022).
We will continue to bring the voices of cancer patients and families in NL to the heart of the conversation, and elevate them. Stay tuned for new posts where we will talk about how, where, and when we communicate the patient and family perspectives, opinions, interests, needs, or priorities!
One of the primary aims of this group has been to identify the needs and priorities of the cancer patients and families in the province, and then design research studies and public engagement activities to address these needs. In 2021, we efficiently identified the key priorities of patients and families in the province and are now moving on with specific topics (e.g. mental health needs).
We are excited to say that as the entire group, we also developed two projects together. One of these projects is now funded and aims to organize The Public Conference on Cancer in Fall 2022.
Some of us also advocate on behalf of the cancer patients and families in Newfoundland and Labrador
Dr. Sevtap Savas also sent a letter advocating or better care for cancer patients and families in NL in April 2022
This group currently includes 12 public members affected by cancer, in addition to three investigators (Drs. Holly Etchegary, Cindy Whitten, and Sevtap Savas). We thank the previous members in 2021, Dr. Teri Stuckless, Dr. Farah McCrate, Rebecca Roome, Doug Smith, and two public members, for their contributions!
Dr. Sevtap Savas (Investigator): Dr. Savas is a molecular geneticist by training. During her graduate studies, she did work on Mendelian diseases, such as Spinal Muscular Atrophy (SMA) and Usher Syndromes. Since 2002, her research is fully focused on cancer. Her current cancer research interest are: medical, social, and patient-reported outcomes in cancer and their genetic, socio-demographic, and disease-related predictors. In addition, she leads large-scale genomic sequencings to help identify biomarkers in cancer. She is increasingly involved in patient-oriented research and public engagement, thanks to many wonderful public and patient partners, colleagues, and funding by the Office of Public Engagement at Memorial. Together with other dedicated individuals in the province, she advocates in order to improve the conditions and experiences of cancer patients and families. She is the lead for the Public Interest Group on Cancer Research since its inception (2021), a member of the TFRI’s Marathon of Hope Atlantic Cancer Consortium, the lead organizer of the Public Conference on Cancer (2022), and the current chair of CAPO’s Advocacy Committee.
Dr. Holly Etchegary (Investigator): Dr. Holly Etchegary, PhD is an Associate Professor in the Faculty of Medicine, Memorial University. She is an applied health services researcher and social scientist whose research program revolves around the psychosocial impacts of genetic conditions, health decision making and the health system and clinical management of cancer, including inherited cancers. A social scientist by training (Social/Health Psychology), she has content expertise in public attitude research and methods and has conducted numerous studies on general public and patient perceptions of genetics and genomics. She is a founding member of the Public Interest Group on Cancer in NL. Since its inception in 2014, she is the Academic Patient Engagement lead for NL’s CIHR SPOR Support Unit and sits on CIHR’s national patient engagement working group. She has expertise in patient-oriented research methods, patient engagement, and mixed methods for health research generally. Many of her research projects include patient and family members as partners and she teaches the only graduate level course on patient engagement in health research in Canada.
Dr. Cindy Whitten (Investigator): Dr. Cindy Whitten, Ph.D., M.Sc., is a Clinical Research Scientist and Manager of Applied Health Research in Eastern Health. She is also a sessional Assistant Professor in the Faculty of Humanities and Social Sciences at Memorial University. Her research interests include: access to health care for marginalized populations, infectious disease transmissibility in institutions, mental health and addictions, the use of segregation in acute care settings, correctional health care, and correlations between diagnosis and mental health. Dr. Whitten values patient-centered research while encompassing the ideologies of lived experience. She has a vast background in both qualitative and quantitative research methodologies and values collaborative research which aims to improve patient outcomes and increase healthcare sustainability.
We formed this group in 2021.
We gratefully acknowledge funding by The Office of Public Engagement – Quick Start Fund that made this partnership possible! We also thank NLSUPPORT for supporting us.
The Public Interest Group on Cancer Research is a meaningful partnership between scientists at Memorial University and a diverse group of members of the public (including cancer patients, families, healthcare providers, and policy makers) in order to bring an impactful and positive change to the lives of individuals affected by cancer.
You can check these links for further information about Why and How we formed this diverse and inclusive group: