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