CHICAGO--Faced with a scarcity of tumor samples, a pair of top cancer institutes went directly to patients to recruit research participants--and it worked.
Only a tiny portion of the 150,000 metastatic breast cancer sufferers in the U.S. receive care at centers that conduct research on tumor samples. So, back in October, investigators from the Broad Institute at MIT and the Dana-Farber Cancer Institute teamed up with patients and patient advocacy groups to roll out mbcproject.org, a website to help metastatic breast cancer patients participate in study research regardless of their location.
In a matter of months, the group had recruited thousands of patients--a “remarkable achievement,” women’s cancers expert Don Dizon said at the American Society of Clinical Oncology annual meeting here.
So how did they do it? The research centers used social media, newsletters, blogs and other digital channels to go directly to their target audience, rather than using individual physicians to get to patients. It paid off: 95% of patients who enrolled provided detailed info on their cancer, treatments and experiences; more than 1,000 gave researchers access to copies of their medical records and allowed them to conduct next-gen sequencing on their tumor samples; and more than 400 sent saliva samples collected at home in to the Broad.
“The quantity of data obtained from patients treated in the real-world, including information from those who responded exceedingly well to certain treatments, could be a source of insight as we push forward in our path towards precision therapy,” Dizon said in a statement.
Pharma may want to take note, especially as it looks “beyond the pill” for ways to get ahead. The Broad and Dana-Farber researchers are hoping the direct-to-patient initiative will give them a window into the disease and its treatment that they can use to develop better treatments, and those kinds of insights could certainly come in handy for drugmakers.
Meanwhile, pharma companies have been working to drum up other "beyond the pill" approaches, exploring ways to listen to patients, improve outcomes and build relationships with payers and patients. Recently, they've done so by turning to tech; respiratory players GlaxoSmithKline, Novartis and Boehringer Ingelheim, for example, all recently inked "smart inhaler" partnerships that they hope will help boost drug adherence.
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