Precision medicine challenges met with "power to the patients"

<p id="">Our <a href="http://blog.mobiushealth.com/blog/2016/06/a-big-year-for-precision-medicine" id="">previous posts</a> about precision medicine painted a pretty rosy picture. The $1,000 genome is a reality, and by the end of 2016 the U.S. will have enrolled more participants in precision medicine studies than any other country. Geisinger’s MyCode Initiative is linking 100,000 genomes to health records and the Federal Precision Medicine Initiative (PMI) is on track to compile medical and genomic data from 1 million volunteers by 2019. We can only begin to imagine how all this data will create opportunities for truly individualized care. </p><p id="">But expanding precision medicine also means collecting and sharing data on a hard-to-comprehend scale, and this raises some serious challenges. </p><p id="">These challenges are the same as for any big data project, only in the case of precision medicine they’re even bigger. Cancer is one illness where knowing someone’s genetic makeup can already help doctors prescribe more effective treatment options based on specific gene mutations. But, as <a href="http://www.fastcompany.com/3057177/obamas-precision-medicine-initiative-is-the-ultimate-big-data-project" id="">Fast Company reports</a>, sequencing the genomes of the 1.65 million people who will be diagnosed with cancer this year would amount to four billion gigabytes of data, roughly 400,000 times all the information in the Library of Congress. </p><p id=""><a href="http://www.fastcompany.com/3057177/obamas-precision-medicine-initiative-is-the-ultimate-big-data-project" id="">According to</a> Eric Dishman, who&nbsp;<a href="http://www.healthcareitnews.com/news/eric-dishman-exits-intel-head-national-institutes-health-precision-medicine-research" id="">was appointed</a>&nbsp;earlier this year to lead the PMI’s 1-million volunteer cohort study, sharing this information in a secure way is “one of the biggest of the big-data challenges that we're ever going to have to solve.” Today, only 4% of data on cancer patients is accessible to researchers, so the challenge is not only to recruit new participants for studies, but also to make existing data widely available to researchers.</p><p id="">Data sharing understandably requires careful measures to protect patient privacy, but it also raises questions about how the benefits of precision medicine get back to patients. Both concerns have been a big focus for the White House, which last November released its final <a href="https://www.whitehouse.gov/sites/default/files/microsites/finalpmiprivacyandtrustprinciples.pdf" id="">Privacy and Trust Principles</a> for the PMI and is currently <a href="https://www.whitehouse.gov/webform/precision-medicine-initiative-draft-data-security-policy-principles-and-framework" id="">accepting feedback</a> on its Draft Data Security and Policy Principles and Framework.</p><p id="">The White House’s February Precision Medicine Summit marked exciting progress for data sharing, <a href="http://www.fastcompany.com/3057177/obamas-precision-medicine-initiative-is-the-ultimate-big-data-project" id="">according to Fast Company</a>. In conjunction with the summit a group of healthcare providers announced new patient-data plans designed to revamp antiquated systems for sharing medical data. Institutions like Yale New Haven Health and UCLA Health will start allowing patients to easily download their health records this year or next, and the new systems will make it easier for individuals to securely donate their data for research. </p><p id="">A NIH pilot program called <a href="https://www.healthit.gov/buzz-blog/health-innovation/nih-and-onc-launch-the-sync-for-science-pilot/" id="">“Sync for Science”</a> takes a similar approach, working to enable individual health data access and donation. This approach - <a href="http://www.fastcompany.com/3057177/obamas-precision-medicine-initiative-is-the-ultimate-big-data-project" id="">call it</a> “power to the patient” - is emerging as a way to address challenges facing precision medicine, whether data security, privacy, or how the benefits of research get back to patients.</p>