We are pleased to invite all Atlantic Canadians to this free, virtual, and public conference on cancer and Precision Medicine on March 15, 2025!
This conference is organized by the Atlantic Cancer Consortium Patient Advisory Committee (ACC PAC), consisting of 14 members from across Atlantic Canada.
The conference will include speakers representing cancer patients, caregivers, researchers, healthcare and support service providers, leaders, and advocates.
Opening and closing keynote speeches will be delivered by a panel of patients and our special guest (Darrell Fox, the younger brother of Terry Fox), respectively.
Topics include lived experiences of patients and caregivers from various backgrounds, clinical trials in cancer, precision medicine in cancer, clinical and support services offered to cancer patients in Atlantic Canada, and role of advocacy in changing things for the better.
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 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
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 “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
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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!
Come join us on October 15, 2022 Saturday for this free, public conference full of talks by great speakers, including cancer patients, family members, experts, and healthcare providers and more!
Stay tuned for the registration information (coming soon).
