/LRG attends Partnering for Cures in Boston

LRG attends Partnering for Cures in Boston

By |2018-10-29T14:02:07-04:00September 18th, 2017|Newsletter|

Partnering for CuresI recently traveled to Boston, Massachusetts to attend Partnering for Cures. This is a meeting sponsored by Faster Cures that brings together patient advocates, scientists, policy-makers, and other leading members in the industry who are working towards fostering valuable collaboration in order to help provide patients what they really need, a cure.

The key topic for this conference was “patient-centricity”, the concept that patients are the experts in their own disease and should be the ones propelling changes within the health care industry.

The conference opened with a plenary titled “Patient-centricity: What’s the return on Engagement?”, where members of different organizations discussed how their patients help drive their organization. A common theme within this discussion was patient registries and engaging the patient’s voice in different areas of healthcare including clinical trial design, drug marketing, and helping pharmaceutical companies understand the true burden of a disease. Theresa Mullin from the U.S. Food and Drug Administration can be quoted for saying that “Patients are experts,” and they should be listened to and learned from.

This is not news for the Life Raft Group since we have always known the importance of a patient’s voice. The LRG Patient Registry is a perfect example of this. For over fifteen years, we have collected medical information from patients themselves regarding their GIST diagnosis and throughout their entire treatment. Today, our Patient Registry is the largest GIST registry with robust data that is provided by the patient experts themselves.

The conference went to breakout sessions, where topics such as sharing data and clinical trials were discussed. Data sharing is crucial in helping researchers draw conclusions and better understand diseases, yet there are still barriers that prevent the ease of sharing data. Some suggestions that arose to breaking these barriers include more accessible electronic health records and patients advocating for their cause to Congress. Although there have been advances in the data sharing world with new technology being developed such as data mining and data sharing databases, there is still a long way to go.

The Life Raft Group shares in the belief that collaboration will help drive us closer to the cure. Our recent joint research project with Columbia University Medical Center, NewYork Presbyterian is an example of collaboration meant to help keep patients alive and find new treatments.

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