Last year, we created the Public Interest Group on Cancer Research in N.L., an academic partnership between community members and Memorial researchers.
The main interest of our group is to make a positive difference in the lives of cancer patients and families in Newfoundland and Labrador via designing scientific studies, and public engagement and education activities on cancer.
In 2021 our group consisted of 18 volunteer members, including two scientists, one oncologist, one health-care administrator, two community members and 12 cancer patient and family representatives from our province.
Together, we put the patient and family perspectives and lived experiences right in the center of the conversation.
Needs and priorities
While we are a new group, our work has been productive and highly successful.
For example, our group’s work in 2021 focused on discussing the needs and priorities of the cancer patients and families in our province.
Here, we are pleased to summarize the key points.
- The need for better health-care, accessibility and support for every patient and family in Newfoundland and Labrador. In addition to the need to improve the overall health-care services and accessibility, sadly, there is inequality and disparity in access to health care and services that need to be fixed. For instance, cancer patients living outside of St. John’s, patients unaware of (or unable to access) support programs and services, elderly patients and patients with disabilities, patients with late and/or long-term effects of cancer seem to be particularly disadvantaged compared to other patients.
- The need for better cancer care, information resources and knowledge sharing. This is the most significant needs theme identified by our interest group. Many patients and family members are either not aware of, or unable to access useful and accurate information, reliable information resources, effective communications or services that they need or may benefit from during their cancer journey. This also applies to the provincial cancer care program, which offers many useful support programs and services to Newfoundland and Labrador residents affected by cancer.
- The need for better awareness by all stake-holders and patient empowerment. Patient empowerment through reliable knowledge and access to efficient clinical and support services is critical, as it can positively influence their well-being and health outcomes. In addition, there is a need for effective conversations including all sides (health-care system, health-care providers, patients, family members, co-workers, public members) and increasing awareness about the lived experiences of the cancer-affected individuals. Such conversations can limit some of the negative experiences (e.g. lack of access or opportunities) and increase the support cancer patients and families can benefit from.
Our work has the potential to lead to meaningful scientific, academic, and health-care activities.
Hence, we are keen about discussing our work and raise awareness about cancer patient and family perspectives.
In this regard, we are pleased to note that we sent a detailed report to the provincial cancer care program regarding our activities and discussions.
We also plan to present our work in national and international scientific conferences, as well as in local media for a wider access.
Hearing voices of those affected
The interest group has also developed two proposals, one of which is a virtual public conference on cancer to be held in fall 2022.
We believe that over time, these and future conversations will promote better cancer awareness, and better cancer care and support in our province.
We sincerely believe that partnering of academic and health-care units with community members and affected individuals, as we have done in this group, is essential for hearing the voices of the affected individuals and identifying what matters most to them.
We are enthusiastic to continue our work. We are also interested in expanding our membership – if you are a cancer patient or a family member and are interested in joining our interest group, please contact firstname.lastname@example.org.
We would particularly like to have new members with an age above 60 years and living in Labrador. Members from other under-represented communities (for example, LGBTQS2+) are also welcome.
We gratefully acknowledge that the Public Interest Group on Cancer Research is funded by Memorial’s Office of Public Engagement and supported by NL SUPPORT, Faculty of Medicine.
This article is authored by Dr. Sevtap Savas, Division of Biomedical Sciences, Faculty of Medicine, Memorial University; Dr. Holly Etchegary, Clinical Epidemiology Program, Community Health and Humanities, and patient engagement lead, NL SUPPORT, Faculty of Medicine, Memorial University; and Dr. Teri Stuckless, Cancer Care Program, Eastern Health, and Discipline of Oncology, Faculty of Medicine, Memorial University.