Today, academic medicine and health policy research resemble the automobile industry of the early 20th century — a large number of small shops developing unique products at high cost with no one achieving significant economies of scale or scope.
Academics, medical centers, and innovators often work independently or in small groups, with unconnected health datasets that provide incomplete pictures of the health statuses and health care practices of Americans.
Health care data needs a “Henry Ford” moment to move from a realm of unconnected and unwieldy data to a world of connected and matched data with a common support for licensing, legal, and computing infrastructure. Physicians, researchers, and policymakers should be able to access linked databases of medical records, claims, vital statistics, surveys, and other demographic data.
To do this, the health care community must bring disparate health data together, maintaining the highest standards of security to protect confidential and sensitive data, and deal with the myriad legal issues associated with data acquisition, licensing, record matching, and the Health Insurance Portability and Accountability Act of 1996 (HIPAA).
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. We propose to facilitate these enclaves through a governance structure know as a digital rights manager (DRM).
The concept of a DRM is common in the entertainment (The American Society of Composers, Authors and Publishers or ASCAP would be an example) and legal industries. If successful, DRMs would be a vital component of a data-enhanced health care industry.
Giving birth to change. The data enhanced health care industry is coming, but it needs a midwife.There has been explosive growth in the use of electronic medical records, electronic prescribing, and digital imaging by health care providers. Outside the physician’s office, disease registries, medical associations, insurers, government agencies, and laboratories have also been gathering digital pieces of information on the health status, care regimes, and health care costs of Americans.
However, little to none of these data have been integrated, and most remain siloed within provider groups, health plans, or government offices.