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!
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.
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.
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.
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.
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.
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.
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 “Ilearnt 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
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.”
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!
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.
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
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.
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.
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