Kudos To the Metastatic Breast Cancer Project for Directly Engaging Metastatic Breast Cancer Patients Nationally
by Tammy Sachs, CEO and Founder
When I read about the Metastatic Breast Cancer Project (a co venture of MIT and Harvard's Broad Institute in conjunction with the Dana-Farber Cancer Institute) I thought, "Finally! Here is a study that bridges all the barriers that prevent patient reported information from being collected nationally.” It speaks in conversational language to honor the input of those actually experiencing the disease – not their doctors, clinical trial investigators or individual hospitals. It collects personal experience and makes it easy for the patient to have their records crowd-sourced to inform the study.
When I read about the Metastatic Breast Cancer Project, I thought, "Finally! Here is a study that bridges all the barriers that prevent patient reported information from being collected nationally”. It speaks in conversational language to honor the input of those actually experiencing the disease – not their doctors, clinical trial investigators or individual hospitals. It collects personal experience and makes it easy for the patient to have their records crowd-sourced to inform the study.
On a personal and professional level, this struck me as game-changing-ly inclusive, empowering and effective. The Dana-Farber Cancer Institute is known for amazing innovation (collecting longitudinal histories of “at risk” people to understand what, beyond genetics, causes familial disease.) They use tablets in their infusion centers to have patients self-report chemo-related side effects. This is something critical and not often captured in a systematic, real-time manner.
Reading the instructions revealed the empathy and skill of practitioners partnering with patients in this study. Cancer, as an oncologist I know told me, “makes you crazy” as it's not known what brings in on, how it will take shape, and what impact it will have on the patient and their family. It will be wonderful to follow how this study progresses and how it makes those impacted by metastatic breast cancer feel to be an integral part of the solution.
Another effort to empower those living with metastatic breast cancer, which was funded by Pfizer and created by Y&R with many advocacy partners, is A Story Half Told. The premise is that so much attention goes to those with earlier stage breast cancer and the amazing survival outcomes that are increasing every year. This tells the stories of those that can feel ignored as their survival outcomes are by no means guaranteed… yet.
What are your thoughts on this project? What other initiatives are you familiar with that engage patients in the search for the cure?