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The Patient-Centered Future: Are We There Yet?

Posted on Tue, Jun 17, 2014 @ 06:48 AM

DIA kicked off its 50th Annual Meeting in San Diego, yesterday, where the theme is "Celebratejheywood2 the Past - Invent the Future." The future (or part of it, anyway) seems to have arrived at DIA 2014 where, from keynote to closing, patient advocates have a prominent seat at the head of the table; a table previously reserved for health care professionals. It makes us hopeful: is the personalized, patient-centered future here?

The organization's Patient Advocate Fellowship Program recognizes patient advocates who actively influence the drug discovery process. Eighteen advocates are participating in every facet of the meeting with the goal of furthering partnerships and collaborations between patients and health care professionals. Sessions like "Engaging Patients through Digital and Social Media Communities" and a keynote by Patients Like Me Co-founder and Chairman, Jamie Heywood, show that industry has become more aware of the value of patients' lived experiences in terms of drug development.

Yesterday, Patients Like Me unveiled three new services that ease collaboration between patients and pharmaceutical companies during clinical trials. At the same time, the Foundation for the NIH announced Lung-MAP, the Lung Cancer Master Protocol.

Lung-MAP is a collaborative clinical trial effort between government agencies, pharmaceutical companies, and patient advocacy groups that will screen patients for cancer-related genes and then match patients to the best one of five possible therapies that will address their specific lung cancer profiles. This could represent a tremendous shift the clinical trial paradigm that would allow greater participation in trials.

All is not lollipops and kittens, however. Free the Data, a consortium managed by the Genetic Alliance, points to areas where collaboration is not king. According to Free the Data, there are 77 laboratories in the world that provide testing for BRCA 1 and 2, gene mutations that increase risks of developing breast or ovarian cancer.  Of those labs, only 5 make the data that they collect available through ClinVar, a public, open access archive of genetic information. 

Are we there yet? Not yet. Not quite.

Image: Patients Like Me Co-founder & Chairman, Jamie Heywood gave the keynote address at DIA 2014. Photo from Patients Like Me.

Tags: cancer, clinical trials, personalized medicine, cancer studies


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