Demystifying the Data
It’s been said before, but knowledge is power. Being well-informed helps us make better decisions. And, in the healthcare space, when patients are well-informed they have better outcomes.
Knowledge is more than access to information, especially since the internet makes a high volume of sometimes dubious information “accessible” in a few clicks. One of the best ways to gain knowledge is through meticulous research of credible sources. But being immersed in the world of breast cancer treatment data is daunting, overwhelming and even draining. Especially, because the breast cancer treatment landscape is constantly changing.
Whether we call it precision medicine or personalized medicine, when we say it’s changing, we’re mostly talking about targeted treatments. Researchers work away in labs with cell-lines in Petri-dishes, continuously learning more about the changes that happen in cells that cause cancer. Different changes cause different types of breast cancer. They’ve been able to develop treatments that specifically target these changes.
This is all very good and exciting but navigating the current complexities of new treatments places a burden on both healthcare professionals and patients. It is particularly difficult for those newly diagnosed – processing the shock of the diagnosis itself, being more or less thrown into learning a new language in a foreign land and immediately needing to make an overwhelming number of decisions. And, while so many in the metastatic community have, through experience and years of treatment under their belts, acquired an unbelievable amount of knowledge, the MBC community is particularly in need of support in understanding how new treatments work.
Targeted treatments start in the metastatic setting and there’s a need for the MBC community to know how biomarker testing is done to determine if there’s an actionable treatment for them, and when these tests are done and why they may need to be re-done. I see friends on Facebook with metastatic disease who have had progression polling their metster community for information about treatments. There’s an urgency to gathering intel to help guide their own next steps. There’s also knowledge exchange that’s just so wonderful to watch unfold.
Whether newly diagnosed or an MBC thriver, as difficult as learning this new language is, the appetite to learn is strong. Last year, we surveyed our community to gauge the level of knowledge and interest in clinical trial data. What was clear from the results is that women think having clinical research information is important. Eighty-four percent (84%) said understanding clinical research helps make decisions about treatment and care and 93% said having more information helps them cope with their cancer. But only 10% said they felt they understand clinical research very well. We want to help change that.
We want to empower this community to learn about new treatments, clinical trials and research so you can confidently participate in shared decision-making with your healthcare team.
You’ll be seeing a new stream of content that aims to “demystify data” for our followers. Lots of it will be bite-sized. There’s an art to making science content as human and relatable as possible without losing the scientific accuracy.
And the best news I can re-emphasize to close off here is that the breast cancer treatment pipeline is exciting! After a pretty quiet decade, the past few years have brought really exciting new treatments to our space with CDK4/6 inhibitors and new combinations in the neo-adjuvant setting. And there’s more to come. You probably noticed all our surveys earlier this year, looking to interview people who’d received certain targeted treatments because we’re working on getting them approved for funding in Canada. But that’s a whole other story I’ll save for another day! – MJ DeCoteau