Do the cancers diagnosed in other family members mean something for you?
Possibly. Take a look.
Tag: Canada
Study information – Social and workplace lived experiences of cancer patients in Newfoundland and Labrador
RECRUITMENT STARTED!!
Study Information
Study Title: Social and workplace lived experiences of cancer patients in Newfoundland and Labrador
Why do we want to conduct this research?
Cancer is a common disease affecting our population. Understanding experiences of individuals living with, through, or beyond cancer is important in order to inform social, workplace, and healthcare programs and policies.
What are our goals?
We aim to understand cancer patients’ experiences regarding their social and workplace interactions in Newfoundland and Labrador population.
We also would like to know whether these experiences differ between:
- individuals from different geographic regions of NL,
- individuals diagnosed with cancer at a young age (before 45 years of age), and
- individuals, who are members of the 2SLGBTQIA+ community.
How are we going to achieve our goals?
We will invite interested individuals to join for a group discussion over the phone or in a virtual meeting. Meetings will be recorded so that we can transcribe the discussions. These discussions will then be analyzed to distill key points.
We will repeat these steps for each patient group that we describe above. We will then compare the key points identified from each group.
We will also ask you to provide us basic information about yourself, your economic status, employment, and disease (cancer).
Why participate in this study?
Our previous studies and interactions with cancer-affected individuals indicated that there may be changes in social and workplace experiences following a cancer diagnosis. By conducting this study, we hope that we will get a better understanding of these experiences.
Understanding cancer patients’ experiences about their social and workplace interactions in turn can help with future experiences and practices. For example, it can:
1) inform public education programs and campaigns
2) improve life experiences of cancer patients, their quality of life and social outcomes
3) implement better healthcare and social support services as well as workplace policies
4) move towards a more inclusive society
These changes then can positively impact the life and workplace experiences of future cancer patients in our province (and possibly beyond).
Who can participate in this study?
Individuals who:
-reside in Newfoundland and Labrador;
-are at least 18 years of age;
-have had a cancer diagnosed in the last 5 years (at the time of recruitment);
-have worked following their diagnoses;
-can use and have access to phone or internet and computer
are eligible to participate.
Additionally: we are looking for individuals diagnosed with cancer in each of the Regional Health Authority Regions (Eastern, Western, Central, Labrador and Grenfell),
or those who are diagnosed with cancer before the age of 45 years of age,
or those who identify as members of the 2SLGBTQIA+ community
How can you participate?
Please contact the research team.
Ms. Krista King is the graduate student, who will be conducting the focus group discussions and other procedures. Krista will be happy to talk to you about this study and answer any of your questions. Krista can be reached at 709-864-4618 or krista.king@mun.ca.
Dr. Sevtap Savas is the scientist leading this project. She can be reached at 709-864 6507 or savas@mun.ca.
Health Research Ethics Board
If you have any questions regarding your rights as a participant, you can contact the Health Ethics Research Board in St. John’s at 709-777-6974 or info@hrea.ca.
THANK YOU FOR YOUR INTEREST.
This Is Our Conversation_Potential links between cancer and age, social determinants of health, and access to information and healthcare services
Why do we have a slightly higher risk of developing and dying from cancer, compared to other provinces?
(I think somewhere I forgot to say “lack of”. Lack of healthy food and healthy environments are linked to adverse life events)
Talk to you soon!
This Is Our Conversation Series_Cancer incidence and mortality numbers in Newfoundland and Labrador
These numbers hit the home hard – every year in Newfoundland and Labrador we do have a number of individuals diagnosed with cancer and die because of cancer. Take a look at today’s episode:
This Is Our Conversation Series_What is the chance of dying from cancer in Canada?
One post
One radio interview
One media piece
One piece of knowledge
One discussion
One public event
One social media post at a time
We will help transform the word #cancer from the #ElephantInTheRoom to a public knowledge
Knowledge can be empowering. Join the conversation and help spread the word.
Sevtap Savas, PhD. Jan 21,2023. St. John’s.
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
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.
Public Conference on Cancer – Feedback
We are very excited to summarize the feedback we received on the Public Conference on Cancer that was delivered on October 15, 2022.
A total of 52 participants completed the Feedback Survey. In addition, we received email and social media comments.
Overall, the feedback recieved was overwhelmingly positive! Thank you everyone who was involved and participated in this Conference, and made it a success story!
The key points made by Survey respondents can be summarized as follows:
- For all talks combined, around 95% of the respondents agreed that “The sessions were presented in an understandable manner” and “I learnt valuable information” – these indicate the effectiveness of the event and speakers in exchanging knowledge
- The perspectives and experiences delivered by the patient and family members speakers were impactful – this highlights the importance of including patient perspectives when designing and delivering public events focusing on knowledge exchange
- Learning about patient and family perspectives as well as the cancer screening and support services available in the province were the two most valuable parts of the Conference – this indicates that we met our objectives, as exchanging knowledge about these topics were among the main goals of our Conference
- Preventing tech issues, scheduling more time for questions, and making the registration process simpler are among the top priorities to address in the future events – we really appreciate these feedback and are committed to work on them in future events
- A number of great topics were suggested for future events, such as palliative cancer care and specific cancers – these suggestions indicate need and interest for future public events
- Respondents came from a variety of age groups, but mostly from Eastern Health region – this latter point indicates that we need to work harder next time to reach residents in every corner of the province
- A variety of recruitment strategies helped recruit the respondents, but social media and the Memorial University communications were the two most effective ways to do so
- A part of the respondents were outside of NL – this indicated that the Public Conference on Cancer was not geographically restrictive
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Examples to participant comments are as follows:
“So many valuable points. The goals of this conference was very well addressed.”
“Personal stories that reflected the presenters’ journeys provided meaningful takeaway and reflection.”
“Provided a forum for the general population to learn more.”
“This was a fantastic event and extremely well done.“
“Do some sound and tech testing / test runs with pre-recorded presentations ahead of time to limit technical difficulties.”
“It was fantastically organized, the diversity of the voices, the mix of health professionals, management/directors of the health care organizations, people who’ve lived the journey.”
“Possibility to re-watch/listen to the talk/presentation in the future might be useful for other people who could not attend it.”
“Maybe, giving presenters a little more time for their topics.“
“The registration process may be intimidating to members of the public.”
“It was an excellent event, and I don’t think you guys could have done any better.”
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We are humbled by its impact and how well this Conference brought together all stakeholders; prompted us to learn from each other (particularly from the individuals affected by cancer); and motivated us to organize more public events on cancer in the future.
We sincerely thank:
- all who provided feedback and telling us how we have done and how we could do better next time
- all who helped organize the Public Conference on Cancer and contributed to its planning and delivery, including but not limited to the Public Interest Group on Cancer Research, Dr. Teri Stuckless, and Alicia Follett
- all speakers that delivered talk and invited experts that addressed the questions of participants during the Conference
- everyone who helped with recruitment
- all Conference participants for making it such a dynamic, interactive, effective, and memorable public event
- Melissa MacLean, Anuj Charan, and Dan DeLong from OPED for setting up and managing the virtual Conference platform, taking care of the tech issues, and implementing the registration page and feedback survey
- NLSUPPORT for supporting this Conference and Discipline of Oncology at Faculty of Medicine for financially supporting it, and
- Office of Public Engagement at MUN for providing us funds (Accelerator Funds) to organize this Conference – without your commitment and support, we could not achieve this
It was a highly rewarding experience. We hope to see you in our next public outreach and engagement events!
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.
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.