I am pleased to report on the successful completion of our project "Creating a Province-wide Public Interest Group on Cancer Research".
This project was funded by the Office of Public Engagement in 2020 and was supported by the Faculty of Medicine and NLSUPPORT, Memorial University.
WHAT IS OUR MOTIVATION IN CONDUCTING THIS PROJECT?
Our primary motivation is to make positive differences in the lives of cancer patients and families from Newfoundland and Labrador (NL).
WHAT IS THIS PROJECT ABOUT?
We aimed to partner with cancer patients and family members in NL, and together design research projects and public engagement activities on cancer.
You may ask why such a partnership?
We wanted to partner and collaborate with cancer-affected individuals because such partnerships lead to more meaningful studies and events that include their perspectives and best respond to their needs.
WHAT DID WE ACHIEVE DURING 2021?
It has been a very productive year for our group, despite the pandemic.
1) We first successfully formed a diverse and inclusive group of 18 individuals with province-wide representation (https://gazette.mun.ca/public-engagement/unprecedented-resource/).
Twelve of these members are cancer patient & family member reps from Newfoundland and Labrador, with the following characteristics:
- At least one rep from each of the four health authority regions (Labrador=1, Central=2; Eastern=7, Western=2)
- 4 men and 8 women
- 8, 1, and 3 individuals self-identifying as White, Asian, and Indigenous, respectively
- 4 individuals with a family history of hereditary cancers
- 4 individuals self-identifying as having disability
- At least one rep in age groups between 18-66 years
- 4 individuals from rural areas
- A mix of individuals who are either diagnosed with cancer and/or have a family member diagnosed with cancer
- Overall, 14 different cancers being represented/advocated for
We are very excited about having such a diverse representation that enables us to hear many different opinions and voices.
2) We then conducted virtual meetings to discuss the needs and priorities of the NL cancer families. Very vivid and informative discussions have occurred during these meetings.
These group discussions identified common priority themes as well as opportunities for future cancer research, public education & patient advocacy activities, and healthcare services.
3) Our discussions led to ideas for research and public engagement activities. We developed two new proposals together – one of them is funded by the Office of Public Engagement and aims to organize a free, accessible Public Conference on Cancer in 2022.
These proposals show the dedication and efficiency of The Public Interest Group on Cancer Research in meeting its objectives.
4) Our project makes positive contributions to many other areas.
For example, it;
- improves our understanding of the challenges experienced by cancer patients and families
- identifies key gaps in our current cancer research activities
- facilitates public discussions of cancer-related knowledge that is identified as most needed by our population
- increases cancer patient-researcher partnerships in Newfoundland and Labrador
- fosters a new partnership between the cancer community, Memorial University, and Eastern Health
- helps increase patient-oriented cancer research activities of Memorial University, in line with growing international calls for patient engagement in research
HOW DO WE PLAN TO COMMUNICATE OUR WORK TO A WIDE AUDIENCE?
Ideas generated by the Public Interest Group on Cancer Research can help improve the conditions and well-being of cancer patients and families in our province.
That is why we plan to regularly communicate our group’s work with a wide audience, for example, with the Regional Health Authorities/Provincial Cancer Care Program, healthcare providers, and members of the general public through publications, institutional presentations, and media interviews. I am pleased to say that we have already submitted a brief report to the Provincial Cancer Care program regarding our discussions in 2021.
Additionally, in order to describe our work and increase our group’s visibility in academic settings, we will also make presentations in national and international scientific conferences.
WHAT DOES THE FUTURE HOLD FOR US?
We are excited about what we have done together as The Public Interest Group on Cancer Research. We hope to continue our activities in the future and continue to bring the cancer patient and family voices to the center of the conversation.
We also plan to advocate for our cancer community in NL – if you are interested in collaborating with us, please feel free to contact me at email@example.com.
If you are a local cancer researcher and would like to partner with or consult the patient and family reps in our group regarding your projects, you can also contact me.
I wholeheartedly thank the other founding members (Dr. Holly Etchegary, Dr. Teri Stuckless, Dr. Farah McCrate, Ms. Rebecca Roome, and Mr. Doug Smith) and 12 patient & family reps in the Public Interest Group on Cancer Research for their dedication, contributions, and enthusiasm to make positive changes in the lives of the cancer patients and families in our province.
We are grateful for the interest of 42 public members in NL, who applied to volunteer in this group. This project was funded by the Quick Start Fund - Office of Public Engagement (Memorial University) and supported by the Faculty of Medicine and NLSUPPORT. We would like to express our sincere gratitude to Dr. Charlene Simmonds and Ms. Julia Burt for their valuable administrative support.
Sevtap Savas, PhD
Professor, Division of Biomedical Sciences
Faculty of Medicine, Memorial University
Phone: 709 - 864 6507