Patient partner recommendations for precision medicine and addressing cancer’s impact in Atlantic Canada

By Georgia Skardasi, MSc. ACC PAC Coordinator, Memorial University of Newfoundland

After a year of a meaningful and enthusiastic partnership, we - the Atlantic Cancer Consortium Patient Advisory Committee (ACC PAC) - published our first peer-reviewed paper titled “Cancer, precision medicine, and Atlantic Canada: A priority setting exercise by the Atlantic Cancer Consortium Patient Advisory Committee” in March 2025.

Below is a summary of the paper:

The ACC PAC was formed in January 2024 and is a diverse committee currently consisting of 11 patient-partners from all Atlantic provinces, a coordinator, a volunteer, a medical oncologist/clinical scientist, and a cancer scientist.

The ACC PAC dedicated several virtual meetings to discussing patient, family and community needs and priorities in the region on cancer and precision medicine that are described in the paper.

The priorities and recommendations formulated by the ACC PAC can be summarized as follows:

1) The PAC members concluded that before focusing on precision medicine, we need to talk about better cancer care that is available to everyone.

• PAC members recognized that individuals affected by cancer in Atlantic Canada have support and information needs that run through the whole spectrum of the cancer experience starting from the pre-diagnosis phase (prevention, early detection), continuing into the diagnosis and treatment phase, and extending to the survivorship, palliative care, and end-of-life phases.
• PAC members emphasized that readily accessible, and easily digestible information on services meant to address these support needs was crucial.
• PAC members also advocated for better healthcare in Atlantic Canada, including primary healthcare, and support services such as the Patient Navigator Programs.
• Lastly, addressing social determinants of health, self- advocacy and advocacy on behalf of other individuals affected by cancer, as well as educating and influencing politicians, and raising awareness on cancer in the community were collectively identified as critical priorities that when addressed could change the trajectory of life for current and future patients. 

2) With regards to precision medicine and applications related to it (such as biomarker testing, targeted therapies and clinical trials) the ACC PAC members concluded that although exciting, they were not well known or easily accessible.

• PAC members emphasized that educating patients, healthcare providers, and members of the general public on precision medicine was critical.
• They also underlined that there is need for better access and affordability of biomarker/genetic testing and precision drugs which can be addressed via the removal of access barriers by provincial and federal governments.

In conclusion, it was the patient partners’ position that for precision medicine to become a widely used reality for cancer patients there is need for a vigorous effort that goes beyond research, involves education of all stakeholders (e.g., patients, healthcare providers and educators), and requires sustained commitment by governments. Also, precision medicine should not be considered as a panacea, but rather as a critical component of cancer care which should be based on a more holistic and equity-based approach.

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We invite you all to read the paper written by ACC PAC as the priorities set by patient partners can help inspire public engagement initiatives, shape research and healthcare services, and empower the public to advocate in pursue of better cancer care in Atlantic Canada.

We hope that our group will encourage more organizations to include patient voices in health research and decision making in cancer, and we are eager to continue our collaboration through exciting new projects that are set to amplify these voices.