Though the flow of data between healthcare organizations and large technology corporations is laden with very valid privacy and security concerns, data sharing still holds immense potential to drive life-saving innovation in healthcare.
Therefore, according to an op-ed in The Hill by Piers Nash, PhD, a cancer biologist and founder and CEO of software company Sympatic, data sharing is necessary for the advancement of medicine.
"There is certainly a case to be made for data privacy," Dr. Nash wrote, but "while stringent privacy rules may sound appealing, they too can be dangerous. Increased regulation could amplify the problem and further enable the gray market."
The solution, then, is to implement ethical safeguards alongside data-sharing initiatives. This ethical framework should be based on four pillars, according to Dr. Nash:
1. To preserve privacy, no individual data — even "de-identified" data — should be transferred without full audit and perpetual provenance.
2. Patient consent should be fully revocable at any time.
3. As in other domains, data proceeds should flow to the data owner/custodian.
4. Use data at the source.