At the OME Precision Medicine summit at UC San Francisco today, attendees launched a social media campaign to engage the nation in an effort to transform medicine as we know it. The MeForYou.org campaign aims to engage the public in addressing a key roadblock to advancing a new model of medicine, known as precision medicine, to provide preventive, predictive and precise care.
The roadblock stems from the fact that while today’s federal regulations are effective in protecting patients’ privacy, there are circumstances in which that very protection impedes scientists’ ability to understand disease. That has consequences not just for individuals but for their families and the world at large. The campaign aims to educate the public about these consequences and begin a national discussion about ways in which patients could be protected, while not slowing discovery or research collaborations -- both key to progress in the field.
“We want patients to know that if we perfectly protect all data, this could impede progress in advancing precision medicine,” said UCSF Chancellor Susan Desmond-Hellmann, MD, MPH. Desmond-Hellmann, an oncologist, previously was director of product development at Genentech, where she helped bring two of the first gene-targeted therapies for cancer to market – a goal of precision medicine.
The first step of the social media campaign is to share the concept of precision medicine with the public and explain how patient data would be key to advancing the field.
The launch of the campaign was the finale of the two-day OME Precision Medicine Summit, hosted by UCSF, which brought together 150 leaders in technology, health, government and industry to address the major stumbling blocks to advancing precision medicine.
UCSF convened the Summit in an effort to move beyond the fact that, today, diseases are defined primary by symptoms and organs. The goal of precision medicine is to identify the underlying molecular drivers of disease, as has been done in a handful of illnesses, mostly certain subtypes of cancer. Understanding diseases at the molecular level would allow for more precise diagnoses, targeted therapies and, in some cases, disease prevention.
Precision medicine promises to harness the great advances in technology, genetics and biomedical research to understand the roots of disease, develop targeted therapies, and ultimately provide precise care to patients worldwide.
Central to the success of precision medicine is the involvement of the public in making their de-identified health and genetic information available for scientists, who could use the data to understand the genetic basis of disease, including who is at greatest risk for medical conditions across a diverse population.
"Every day, people see their caregivers for both health checkups and critical illnesses. At the end of each of those visits, these individuals leave behind simple information on their health, disease risk and responses to medications," Desmond-Hellmann said. "If we could collect that and other data in a secure and private way, we could tap into it to improve the lives of these individuals and patients throughout the world."
Current patient privacy laws are critical in protecting patients from misuse of that information. But those protections also prevent doctors and scientists from sharing de-identified data that could offer key links between seemingly unrelated diseases, or insights on how medications and illness affect diverse populations.
"Those laws are crucial in protecting patients, and we need to make sure they remain strong," she said. "But patients are already disclosing much of this information through social media. We need people to understand the impact they could have on other people's lives and their own health by sharing it with science. That's why we created the MeForYou campaign."
As a clinical oncologist, Desmond-Hellmann said she has seen cancer patients, seemingly in the prime of their lives, for whom medicine had nothing to offer. Those, she said, are the people who drive her to change medicine. MeForYou is asking people who they would "do it" for, whose life is so important to them that -- if they could -- they would transform medicine in that person's honor.
The campaign asks participants to enter their name and email, neither of which will be published, and post their photograph along with the first name of someone they would honor. The photos will create a virtual quilt of dedications on MeForYou.org. Ultimately, the site also will provide additional tools for people to become more engaged in the precision medicine effort, at whatever level they would like.