Utilizing existing tools and platforms to connect patients, patient groups, and the health care industry via a collaborative effort to centralize information and communication

T.J. Sharpe patient1@tjsharpe.com

Abstract

In the 4.5 years since being diagnosed with Stage IV melanoma, I have gotten to write and speak about being the first person in the world to try a specific sequence of immunotherapies, and the numerous hurdles that went with being a cancer clinical trial patient. The story is the same, and the audience usually is too - pharma and biotech companies, clinical research organizations, medical professionals, charity fundraisers, even a lunch briefing on Capitol Hill. Each invested in cancer and melanoma research in their own way; each inspired a bit differently by the hurdles I overcame to find the right clinical trial, get the trial started, and get access to the medicine that would ultimately give me health.

After every one of these, the response is generally the same - thank you for sharing, it is a great reminder of why we do what we do. But what if there were a better way to give that reminder? What if that reminder was not the 30 minute PowerPoint presentation or a panel of testimonials at a conference, but an organically grown and maintained effort to connect patients to each other and to the medical community as shared stakeholders?

The tools available to engage patients globally are now mainstream and accepted communication and collaboration mediums. Industry is adapting to the empowerment of the e-patient and the communities they galvanize, and producing exponentially more patient-friendly and patient-centric initiatives and interfaces to grant those patients the access to data and information they want - and deserve.

Stanford Med-X serves as an ideal breeding ground for connecting those patients who most and best represent their medical affliction, and the ideas and innovations that will continue to transform the patient experience from passive acceptance to active involvement to, someday soon, partnered investment. For me, being a medical pioneer was secondary to finding the treatment that would give me the chance to be a husband and father. Having achieved that recovery, voicing my unique struggles and those many patients have is a responsibility I accept with gratitude. In a five minute Ignite pitch, I aim to present a vision of more active patient involvement and investment into the health care cycle, based on personal experience, ongoing contact with other patient groups, and continued interaction with industry leaders, all looking to create a platform that unites patients and the health care community into one. 
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