Creating a Public Interest Group on Cancer in Newfoundland and Labrador (NL)
Written by: Sevtap Savas, PhD, Division of Biomedical Sciences, Faculty of Medicine, Memorial University, and Holly Etchegary, PhD, Community Health and Humanities; Patient Engagement Academic Lead, NLSUPPORT, Faculty of Medicine, Memorial University
Cancer is a disease that affects too many people and families. According to current estimates, almost 50% of Canadians are predicted to be diagnosed with this disease. Sadly, the risk of developing cancer and dying from it is slightly higher in Newfoundland and Labrador (NL) compared to other Canadian provinces (1).
As researchers, community members and health care providers, we believe there is great value in partnering with individuals and families affected by cancer in Newfoundland and Labrador and it is this belief that led to the idea for a Public Interest Group on Cancer. There is a need for research and public engagement activities that suit the unique needs of our local communities and families. There is also a need to support people affected by cancer in the province, and in keeping with the principles and values of patient engagement, this is best done by hearing the opinions of individuals affected by cancer and working with them.
To that end, a team comprised of Memorial University researchers, Eastern Health representatives and community members applied for funding from the Office of Public Engagement at Memorial to create a Public Interest Group on Cancer. The team was successful and are now inviting interested public members to join this public interest group.
The Public Interest Group on Cancer will connect members of this team and representatives of cancer patients, long-term survivors, caregivers and family members from around our province. Overall, the interest group will provide an additional venue to communicate and understand the needs and priorities of cancer-affected individuals and families. Additionally, members of this public interest group will be consulted on research activities and get involved in the design and conduct of the team’s studies on cancer and public events, and in the dissemination of research findings.
This public interest group will help increase understanding of the experiences and concerns of patients and families affected by cancer in our province. Such information is important for researchers, health care providers and health system decision makers. For example, opinions and suggestions by the interest group members can help guide research and public education and engagement activities in ways most helpful to cancer patients and their families. In some of our past work, these kinds of partnerships helped study how breast cancer patients make decisions about surgery, how patients with colon cancer feel about screening programs, and informed the design of a public education day about inherited cancers and a public conference on Genetics.
Inclusiveness, diversity, and reaching different parts of the province are important for this interest group. Ideally, this group will have representation from patients living with cancer, including inherited and rare cancers, survivors, caregivers, and family members. Representation from all over the province is important, including remote and rural areas that may have different challenges. The team hopes for representation from all genders, ages and social groups. Advertising for this interest group started in March 2021 and if you have an interest in cancer research and public engagement about cancer, we hope to hear from you.
Ultimately, this cancer research public interest group will help carry out research, public engagement and educational events, and advocacy activities that are directly informed by the very patients and families affected by cancer in NL. We believe research informed by the lived experience of patients and families will better identify patient needs and priorities and hopefully lead to positive changes in the care and outcomes of people affected by cancer.
To learn more about the Public Interest Group on Cancer Research and how to become a member of it, please contact Dr. Sevtap Savas (savas@mun.ca) or Dr. Holly Etchegary (holly.etchegary@med.mun.ca). You can also check the following link for information: https://www.mun.ca/publicengagement/engagememorial/publicinterestgroup_cancerresearch.php
This public engagement activity is funded by the Public Engagement of Office of Memorial University, and supported by Faculty of Medicine and NL SUPPORT.
