Grant: Planning and Dissemination Grants - Institute/Initiative Community Support

Some people are born with inherited genetic changes that increase their risk of developing certain cancers. If this risk is found early, before cancer develops, people can often reduce their risk through regular screening, lifestyle changes, or preventive surgeries. However, many people across Canada do not get enough support to understand their risk or make decisions that are right for them. In the province of Newfoundland and Labrador (NL), 70% of people with an inherited cancer risk had already been diagnosed with cancer by the time they received genetic testing. We also found that many of these people were not getting the recommended screening and prevention care. However, those who received earlier support in primary care when making decisions about genetic testing were less likely to be diagnosed with cancer. In this grant, we will bring together pan-Canadian researchers and NL-based knowledge users to plan strategies to improve support for people in primary care when making decisions about inherited cancer risk and prevention. Patients and families, healthcare providers, researchers, and health system partners will take part in three virtual dialogue sessions. In these sessions, we will share Canadian research about decision support and inherited cancer prevention. Attendees will hear from expert guest speakers about approaches taken in other provinces to improve decision support and discuss what is needed in the provincial setting. In the sessions, we will identify key challenges and opportunities to make cancer prevention easier to understand and more accessible for people with an increased risk of cancer. The ideas gathered will help guide future research and NL healthcare improvements to strengthen decision support available earlier in the care continuum and improve cancer outcomes. Because access to this decision support is a challenge across Canada, our findings will be shared nationwide and are likely useful in many other Canadian settings.