Everyone has a digital footprint as a patient, according to Boston-based health attorney and FierceHealthIT Editorial Advisory Board member David Harlow (pictured). When that data is aggregated with the digital footprints of others, it can be usable information, he writes in a recent post for iHealthBeat. The promise of evidence-based medicine, he says, is in the analyses of such data.
Still, Harlow says, health privacy laws and HIPAA remain primary barriers to the free flow of such information and therefore, its insights--and with good reason. He quotes Google co-founder Larry Page, speaking in a recent TED talk, who promoted the notion that health data should be shared for common good; Page proposed the idea of making anonymous health medical records available to doctors for research.
"Yes, Larry, it would be amazing," Harlow says. "But many folks out there are concerned that even de-identified [anonymized] data may be re-identified."
Harlow suggests a "third path" to safe flow of patient information: patient donation of information, de-identified only so much as a patient wants.
"Information silos have been blamed for preventable harm in the past," he writes. "It is clear that silos are still causing harm, and it is equally clear that we have tools available to us that will improve health at both the individual and population levels. Let's use them."
For example, it recently was reported that consumers who track their own health data are willing to contribute that information to larger research projects--and researchers eager to use it--if some basic concerns can be worked out, according to the Health Data Exploration (HDE) project, funded by the Robert Wood Johnson Foundation.
As wearable devices and smartphone apps become more popular for tracking personal health, an array of health data is being generated, but not used in traditional health care, public health or health research, the project report noted.
What's more, data about individual patients collected every day in doctor's offices and hospitals could be used to improve care among the population at large, according to a discussion paper released by the Institute of Medicine last spring. The paper argues that the data should be shared to create a learning healthcare system.
To learn more:
- read Harlow's full post on iHealthBeat
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