WHO ARE WE? The Public Interest Group on Cancer Research is a successful cancer patient-family member-scientist partnership in Newfoundland and Labrador (https://strength-in-community.ca/public-interest-group-oncancer/).
Currently, our group includes 11 cancer-affected public members and four scientists from Newfoundland and Labrador.
WHY DID WE DO THIS PROJECT? One of our goals is to design public engagement activities to disseminate and exchange knowledge about cancer, cancer control and support services, and patient/caregiver perspectives in NL.
We have been active in community outreach and engagement activities (for example, we organized a Public Conference on Cancer in 2022). However, to engage increased numbers of residents and exchange knowledge in a more effective and equitable manner, we need a robust and comprehensive engagement strategy in the province.
WHAT WERE OUR OBJECTIVES? Our goal was to create a stakeholder-informed, equitable, comprehensive, and actionable community engagement strategy on cancer.
To achieve this goal, we aimed to:
1. Create a comprehensive list of cancer-related knowledge that can benefit the NL population
2. Consult stakeholders and identify effective outreach methods and preferences
3. Perform a resource-needs assessment
4. Create and disseminate a public engagement plan on cancer
HOW DID WE ADDRESS OUR OBJECTIVES? We have had extensive discussions within our group. Additionally, we held public consultations with select stakeholders in two public town halls and two individual meetings in May – June 2023. These consultations included 26 stakeholders, in addition to our team.
WHAT DID WE FIND?
1. Our group and stakeholder discussions underline the importance of disseminating reliable knowledge on cancer to the population (from prevention to early diagnosis and survivorship support available to the residents).
2. Our group and stakeholders provided examples of different ways to reach out to residents and form collaborations. While this information was welcome and will be very useful, together with our previous experience it also emphasized that there was no one or efficient way to reach out or engage the population. This variability was mostly because of geographic location, availability and accessibility of technology/internet, and preferred usage of different venues and tools by the residents.
3. Stakeholders emphasized that vulnerable and under-served populations (such as residents utilizing shelters, Indigenous communities, residents in rural and remote areas, members of the 2SLGBTQIA+ community, and newcomers) may have different needs. Forming relationships and building trust with these communities could be an important element of effective and equitable future public engagement activities.
WHAT DO WE FURTHER PROPOSE BASED ON THIS INFORMATION?
1. Ultimately, one effective province-wide public outreach network could be created that would reduce the efforts and cost associated with reaching out to and engaging with residents. This network could be utilized by community organizations, researchers, public engagers, organizations, healthcare system, and Government of Newfoundland and Labrador.
2. Funding and further collaborations and breaking the silos among the stakeholders are needed and can help create effective solutions.
3. Stakeholders consulted during this project were mostly from the Eastern Health Zone. Further province-wide consultations and systematic data collection could help create a more detailed picture and include diverse opinions.
WHAT DO ALL OF THESE MEAN FOR OUR GROUP?
1. This project collected valuable input that can inform future strategies. We – The Public Interest Group on Cancer Research and collaborators - will continue to work towards designing an effective strategy to reach out to more residents in Newfoundland and Labrador and engaging them in conversations related to cancer.
2. We plan to act on some of the ideas created with the help of this project. For example, we plan to put more effort into forming effective collaborations with the NL Health Services, The Provincial Cancer Care program, cancer and community organizations, and the Provincial Government.
3. We plan to form new collaborations with under-served communities (such as, newcomers, 2SLGBTQIA+ community, rural areas, Indigenous peoples).
4. We will continue to apply for funding to organize public events and translate knowledge on cancer.
5. Last but not least, as always, the Public Interest Group on Cancer Research is keen on widely sharing the information gathered and distilled to inform stakeholders. For example, we will utilize social and local media, present our work in academic settings (e.g., conferences, MUN seminar series), and circulate our work to The Provincial Cancer Care Program, Discipline of Oncology at MUN, NLSUPPORT, Office of Public Engagement, and other stakeholders. Additionally, our website as well as any other efficient public outreach tool/venue identified during this project will be utilized to widely disseminate our work to the general public. Please check our website over time for updated information: https://strength-in-community.ca/public-interest-group-on-cancer/
WHAT ARE THE ANTICIPATED BENEFITS OF OUR WORK?
Our project findings can:
1. Inform future cancer outreach activities of all stakeholders (such as, community at-large, researchers, Memorial University, NL Health Services, and Public Interest Group on Cancer Research)
2. Facilitate effective and more equitable public access to cancer-related knowledge and discussions in the province
3. Improve interactions with (and involvement of) a larger number of community members in matters related to cancer
4. Help strengthen the partnership between stakeholders
5. Provide a basis for a more comprehensive consultation process and forming a province-wide public outreach and engagement network
We are grateful for members of the Public Interest Group on Cancer Research for their contributions over the many years; The Office of Public Engagement at Memorial University for funding this project and NLSUPPORT for supporting our team and project; Krista King, Trevor Pomroy, Jim Meaney, Lorie Kielley, Virginia Middleton, Dr. Susan Drodge, Mike Kehoe, Kimberley Rose, Mary Walsh, Deatra Walsh, Jocshan Loaiza, Roumina Rouhani, Shirley Fagan, Mike Warren, Paula Newhook, Dr. Jonathan Greenland, Lynette Hillier, Ashley Dicker, Tia Morris, Harold Hefforton, Ellen Whiteway, Barry Darby, Dr. Lynette Powell and three anonymous individuals for their contributions to town hall discussions/stakeholder consultations.