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
Dr. Sevtap Savas is a cancer scientist. She will speak about the goals and activities of the Public Interest Group on Cancer Research, a successful cancer patient-family member-scientist partnership in Newfoundland and Labrador.
This public interest group includes 12 patient and family members affected by cancer and the Public Conference on Cancer idea was created through their discussions and interests in 2021. They also actively contribute to the organization of this conference.
The work of the Public Interest Group on Cancer Research
By Sevtap Savas, PhD
*Pre-recorded talk (can be slightly different than the alive talk)
Disclaimer: The conference materials are shared for the purposes of education and sharing perspectives only. The information shared by presenters should not be interpreted as medical advice. All health information should be discussed with your health care provider. Organizers, funders, and supporting organizations are not responsible for any misinformation that may be shared.
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;
Effects of the pandemic on cancer patients and family members/loved ones
Our members’ motivation to help other individuals going through cancer. We hear such powerful, genuine, and strong motivation from patient and family members over and over. I keep thinking and comparing them with others that often speak on the public venues. Do you also think that they have no hidden agenda or financial benefits to gain, like corporations or politicians? That they have genuine interest in improving someone else’s life and wellness? That they have no intention or make no attempt to manipulate for personal gain?…. The only personal gain would be the happiness/satisfaction coming out of knowing they did help someone go through cancer journey a little bit easier, or helped them prevent or early diagnose their cancer?
Our members’ experience with disease symptoms, and importance of early diagnosis and cancer screening programs. They mentioned multiple times that if tumors can be diagnosed when they are small, then treatment options are wider and more effective, and patients can have a chance of being cured. There would be also more chances of spending time with their family members/loved ones
Our members’ experience with familial/hereditary cancers, and how genetic knowledge have lowered their cancer risk through clinical management and screening (that is, specifically looking for any abnormality or pre-cancerous tissues). Knowledge is power – knowing our cancer risk can inform us and our physicians, and help take steps to prevent cancer developing in our bodies
Our members’ experience with wonderful/attentive physicians, nurses, and Provincial Cancer Care Program services, including the patient navigator program
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:
