Making the Most of Clinical Trial Data; New York Times, 4/12/16

Editorial Board, New York Times; Making the Most of Clinical Trial Data:

"Some researchers may oppose sharing data they have worked hard to gather, or worry that others will analyze it incorrectly. Creating opportunities for collaboration on subsequent analysis may help alleviate these concerns.

Of course, any data sharing must take patients’ privacy into account; patients must be informed before joining a clinical trial that their data may be shared and researchers must ensure that the data cannot be used to identify individuals.

By making data available and supporting analysis, foundations, research institutions and drug companies can increase the benefit of clinical trials and pave the way for new findings that could help patients."

Give Up Your Data to Cure Disease; New York Times, 2/6/16

David B. Agus, New York Times; Give Up Your Data to Cure Disease:

"HOW far would you go to protect your health records? Your privacy matters, of course, but consider this: Mass data can inform medicine like nothing else and save countless lives, including, perhaps, your own.

Over the past several years, using some $30 billion in federal stimulus money, doctors and hospitals have been installing electronic health record systems. More than 80 percent of office-based doctors, including me, use some form of E.H.R. These systems are supposed to make things better by giving people easier access to their medical information and avoiding the duplication of tests and potentially fatal errors.

Yet neither doctors nor patients are happy. Doctors complain about the time it takes to update digital records, while patients worry about confidentiality. Last month the Association of American Physicians and Surgeons went so far as to warn that E.H.R.s could “crash” the medical system.

We need to get over it. These digital databases offer an incredible opportunity to examine trends that will fundamentally change how doctors treat patients. They will help develop cures, discover new uses for drugs and better track the spread of scary new illnesses like the Zika virus."