Angelina Jolie’s double mastectomy announcement in May made her an immediate poster child for personalized medicine, and she was part of today’s discussion on personalized medicine at CONVERGE in Philadelphia. Personalized medicine has the potential to create new research and analytics tools that can deliver more personalized treatment for patients.
Dr. Kathryn Teng, director of the Center for Personalized Healthcare at the Cleveland Clinic, explained her first reaction to the news. “My question is where are her ovaries?” Teng said.
Personalized healthcare, such as genomics and molecular medicine, biomarkers and early intervention are not incongruent to value-based medicine, Brett J. Davis, general manager of Deloitte Healthcare Informatics said.
Deloitte has helped Intermountain Healthcare develop new data platforms has found the biggest challenge to achieving personalized medicine is not with the technology “but the business and where collaboration between providers and researchers can occur,” Davis said.
Brian Wells, associate vice president, health technology and academic computing at Penn Medicine, said a challenge to achieving personalized medicine is the consent requirements necessary to assuring patient’s health data is protected.
“We can do wonderful things with data,” Wells said. “However, tracking consents and how patient data may or may not be used is a concern.”
Felix Frueh, PhD, entrepreneur-in-residence at Third Rock Ventures said the concern about privacy of patient data is less of an issue than some might think.
“Data is tremendously powerful, but it is used very little,” Frueh said. “Existing large data sets (e.g., pharmacy, clinical data) is not yet helping at the population level.”
Moderator Zack Seward, Innovations Reporter at WHYY/NewsWorks.org, asked about public discomfort with the use of personalized data. “How are we doing in overcoming these cultural challenges?”
Dr. Teng said the Clinic’s approach has been to build trust by educating providers and patients on how the data will be used.
“The concern about data is changing as more people share things through social media,” she said.” People are getting used to being ‘not as private,’ but we need to educate our patients and communities so they know our values with data.”