A DISCUSSION WITH KATHY GIUSTI
Know Your Data, Then Share It.
M
MRF Founder Kathy Giusti is widely recognized for
empowering patients to take an active role in their care and
as a staunch advocate for data sharing. We sat down with her to
discuss what patients need to know about their cancer and how
sharing this information can help them get the best treatment for
their disease.
What do you mean when you talk about “knowing
your cancer”?
Kathy Giusti
Founder, MMRF
Co-Chair, HBS Kraft Precision
Medicine Accelerator
Patients have always been encouraged to know as much about their cancer as
possible. In the past, this has meant knowing symptoms to watch out for, for example,
or concerns to talk to your doctor about. Today, knowing your cancer means so much
more than that. It’s understanding it on its deepest, most basic level – in its DNA.
This information allows you and your doctor act specifically in selecting treatments
or clinical trials that might be best in treating your disease while avoiding treatments
that will not be of benefit to you.
How do you do that?
In addition to standard tests like FISH and gene expression profiling, a growing
number of multiple myeloma patients are having some or all of their cancer
sequenced. When you have your cancer sequenced, your healthy DNA is compared to
your cancer’s DNA to identify genes that have undergone abnormal changes, called
mutations, that affect how aggressive your cancer is, how well you might respond to a
certain treatment, or why the cancer developed in the first place. Genome sequencing
provides such valuable information that it is now a routine part of cancer care at
some medical centers. If it’s not, be sure to have your tissue banked so that your
genome can be sequenced at a later date.
Data-sharing is a real passion of yours. Why?
Researchers need access to large amount of patient data to develop precision
treatments that target the unique aspects of your cancer. This is not possible without
patients stepping up to share their sequencing results and other health data. Sharing
your data is also important because it allows you to understand your cancer and
treatment options in the context of other patients. If another patient shared your
same mutations and benefitted from a certain treatment, wouldn’t you want to know
that? That can only happen if we all share our data and contribute to our collective
understanding of the disease.
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