In the quest to transform unconnected and unwieldy masses of health data into smart data, researchers from the Health Care Cost Institute call for a "Henry Ford" moment to achieve economies of scale.
"Just as the Model-T revolutionized car production and, by extension, transit, the creation of smart health data enclaves will revolutionize care delivery, health policy and health care research," researchers write at Health Affairs.
They suggest taking a page from the entertainment industry--using a digital rights manager (DRM)--as a governance structure. These data enclaves would be secure from outsiders, with carefully controlled access, then providing only the data covered in users' licenses.
With physician's offices, disease registries, medical associations, insurers, government agencies and laboratories all compiling digital information, the governance structure will have to address these legal and administrative issues involved in compiling the data:
- How multiple stakeholders will provide data under standard contribution agreements;
- How to link extremely large and multi-year files, match records across datasets, and provide statistical deidentification where necessary; and
- How to license these data to multiple researchers under standard use agreements.
"The DRM's most important job will be to provide a low-cost, reliable, and technically and legally protective environment in which data owners are comfortable placing their data," researchers write.
The DRM's responsibility will cover meeting all legal requirements--under HIPAA, state law, or others--and negotiating licensing agreements with users. By protecting the data and relieving organizations of the administrative burdens associated with sharing their data, they'd be more likely to do so, the authors say.
2013 brought an uptick in news about hospitals and providers applying analytical tools both for clinical and administrative purposes.
The global healthcare analytics market is projected to be worth more than $21 billion by 2020, according to a report from MarketsandMarkets. Last spring, consulting firm McKinsey & Company projected that big data could help U.S. citizens save as much as $450 billion in healthcare costs.
Data about individual patients collected every day in doctor's offices and hospitals could be shared to create a learning healthcare system, according to an Institute of Medicine discussion paper.
"We are missing a tremendous opportunity to turn our health care system into one that learns from each care experience and leads to better and more affordable care for all," said lead author Michael D. Murray, a Regenstrief Institute investigator and Purdue University professor, in the paper.
To learn more:
- find the Health Affairs post