The Biggest Challenges in Health Care Data

Happy Almost-Long-Weekend, Dailies. I have a treat for you. Lloyd Minor, Dean of the Stanford University School of Medicine and long-time Daily subscriber, is grabbing the helm today. In my travels through the health care world, I’ve met many a wise soul. Dean Minor is one of the wisest and most perceptive. Here, some of his thoughts on the meatiest challenges facing those who hope to tame the medical data menagerie.

Another treat: FORTUNE’s Laura Entis is stepping in for Sy on the news today. We’ll both be back on Tuesday.—CL

Data is reshaping health care – and in Stanford Medicine’s inaugural Health Trends Report, we describe how data now permeates every component of the health care system, from medical research to patient wellness regimes. These vast new troves of data from electronic medical records (EMRs), connected devices, and wearables offer the chance to make health care more predictive and preventive.

If you can use it.

One of the biggest challenges is to free data from the silos in which it too often remains, an issue that affects both patient care and medical research. A first step is to make EMRs interoperable, so that patients can freely share their information with as many providers as they wish. The days when patients are greeted at a doctor’s office by only a clipboard should be long gone. Allowing for truly portable records will lead not only to major improvements in the efficiency of the health care system, but to improvements in care as well.

Challenge No. 2 is data security. Hackers have made health care data a major target, a particularly worrisome development given the sensitivity of this information. In order for individuals to feel comfortable sharing their data, everyone in the health care ecosystem must constantly remain vigilant about protecting data and keeping private information private.

Other hurdles stand in the way of sharing data for research purposes. To medical researchers, the promise of big data is tantalizing, but the reality is often frustrating. Many institutions still lack the technological infrastructure needed to harness their own researchers’ mammoth data sets, let alone those at other academic centers; fixing that alone could present medical science with one of the greatest research opportunities in decades. More investment is needed in those back-end structures, but this is not just a question of computing power alone. As we outline in our Health Trends Report, proper policies and legal agreements must be adopted as well.

On a fundamental level, scientists in both academia and industry must change some of our attitudes about data. Traditionally, researchers and organizations have tended to treat data as a proprietary asset. Yes, there are sound professional reasons and strong incentives to do so, but we must move beyond this kind of thinking. There is so much more to be gained by pooling our data resources than by holding them close.

Hard as it may be for some to believe, the U.S. government has been leading the way when it comes to data sharing. When the Department of Health and Human Services established healthdata.gov, a site that makes available huge amounts of information to researchers from academia and industry alike, it proved a valuable resource to medical researchers. Many have used this data in designing new methods to supplement and even replace clinical trials, which are notoriously difficult to fill with patients. Giving researchers these additional tools can speed the pace of medical innovation and help to bring breakthroughs forward in ways that make a difference for patients.

Big data benefits patients beyond research advances, of course. It can also be a tool that allows us to take greater control over our own medical treatments and wellness. The ability to monitor our personal health metrics on an ongoing basis – and to identify risks and challenges – is hugely empowering. Data-based tools like these allow individuals to partner with their health care providers to take a more proactive and preventive approach to their own health.

These are exciting times in health care, and a new era is within our grasp. If we can overcome some of these obstacles to unleashing the power of big data, the possibilities are limitless.

Dean Lloyd Minor, Stanford Medicine

DIGITAL HEALTH

Genetic testing blues. Wouldn’t it be nice to know the exact diet, sleeping cycle, and exercise routine that works best for you? The genetic startup ecosystem, which now includes a variety of apps along with mail-in spit tests, is built around fulfilling that promise. In theory, it’s a nice idea. In reality, the results are often baffling. (Gizmodo)

Aetna fills a key position. The health insurer hired Ben Wanamaker away from Walmart, where he ran the health division, to run a project it’s running in collaboration with Apple. While both companies have been tight-lipped about the venture, it’s rumored that Apple is planning to offer free or discounted smartwatches to Aetna members. (CNBC)

INDICATIONS

CRISPR debate. Earlier this summer, a team of researchers announced they had successfully cut out defective genetic code in human embryos using CRISPR. The health implications were huge, as were the looming ethical concerns. But less than a month later, in an online paper, researchers (including George Church) are questioning whether CRISPR was actually responsible for the genetic repairs. (Nature)

THE BIG PICTURE

The business of fake science. Omics International publishes more than 50,000 scientific articles a year -- all of which are freely available to the public. Srinubabu Gedela, the company’s founder, says his mission is to “free scientific knowledge.” But outside parties, from academics to the FTC, claim he’s simply spreading sketchy science for profit. The truly scary part? He’s not doing it unaided. Big Pharma is an active accomplice. (Bloomberg)

Thousands more have their HIV status revealed by mail. Earlier this month, Aetna mistakenly mailed letters to 12,000 customers that displayed their HIV status on the envelope. Now, it appears CVS has made the same blunder, mailing out 4,000 similarly revealing letters. (Consumer Reports)