http://www.digitaljournal.com/life/health/obama-pushes-for-greater-data-sharing-for-health-initiatives/article/474027

Obama pushes for greater data sharing for health initiatives

Posted Sep 4, 2016 by Tim Sandle
U.S. President Obama has made renewed calls for new ‘big data’ initiatives in relation to health. The announcement ties in with the ‘cancer moonshot’ and ‘personalized medicine’ initiatives.
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Digital Journal has reported on President Obama’s enthusiasm for personalized medicines (or ‘precision medicine’), where medicines are developed for the needs of individual patients rather than being mass produced. Given increased information about the human body, from projects like the investigations into the human microbiome, there is a growing body of scientific knowledge allowing this to happen. The outcome should be better for patients.
One application of personalized medicine that is advancing well is the Cancer Moonshot plan, which is backed by the U.S. government. The aim here is to develop personalized cancer treatments based on individual patient data.
With the Cancer Moonshot initiative, the White House has said:
“The National Cancer Moonshot will work to accelerate these research efforts and break down barriers to progress by enhancing data access, and facilitating collaborations with researchers…the initiative aims to bring about a decade’s worth of advances in five years, making more therapies available to more patients, while also improving our ability to prevent cancer and detect it at an early stage.”
Last month saw a further developed with personalized medicine with the White House Precision Medicine Initiative (PMI) Summit: Big Data. This meeting, according to BioScience Technology, looked at how the collecting and deciphering of Big Data is the much needed key to unlock the development of personalized medicine.
This is, however, not straightforward and requires considerable volumes of data to be meaningfully examined. There are also questions of patient confidentiality and ethical questions of who owns the data and whether data will be sold between interested parties.
With this patients need to understand what data they are providing to universities and to pharmaceutical companies and what this data, held in a digital format, will be used for.
With those collecting the data, variations relating to sample size, patient demographics, epigenetic effects, and a host other variables need to be unraveled. This is likely to require balanced and agreed statistical methods.
If these issues of data security and data handling can be overcome, then precision medicine promises to be an important step in the history of medicine and healthcare.