Patient data for sale for Clinical ResearchSo a patient might offer access to their data, managed on a FHIR Server, to anyone that can satisfy a smart-contract they put into a public chain. I first described over two year ago as a response to Grahame's original ask Healthcare Blockchain - Big-Data Pseudonyms on FHIR
The smart-contract would include:
- Upfront payment for the access (some micro-payment)
- Requirement for escrow of coin to be unlocked to the Patient if other terms are violated
- Terms of protection of the data
- Kind of clinical trial allowed (heart conditions, but not brain)
- Agreement to keep all research public
- Agreement to contact patient if the patient could benefit from new treatment detected
- Agreement to contact patient if some treatable medical condition not previously known is discovered
- Agreement to not contact patient if terminal condition is detected
How does this work?
Variants on smart-contract based on de-identification capabilityIt is possible that the patient publishes multiple flavors of the smart-contract. Each offering different types of pseudonym blinding: Some flavors would expose MORE information, and have higher contract requirements (like shown above). Some would expose very well de-identified data, and have less strict contract requirements.
Highly de-identified data, where ALL direct and in-direct (Quasi identifiers) are removed. Including fuzzing completely dates, patient characteristics, location, etc. If the data is highly de-identified it is less valuable for clinical trials, but it also wold not need to be as strongly protected. So it is possible for this offering the smart-contract does not require an escrow of coin.
These variants would require that the authorized access to the data enforce these variations. Thus one would need some access method to the data where the de-identification can be accomplished. This might be done by different servers hosting the various flavors, confirmed by a human statistical analysis. This might be done by some automated de-identification service as I describe in
#FHIR and Bulk De-Identification
Am I wrong?
- This article originally published November 10, 2017 Healthcare use of Blockchain thru creative use of Smart-Contracts
- Healthcare use of Blockchain on FHIR
- Blockchain as a platform for Supply Chain
- Healthcare Blockchain use?
- Blockchain and Smart-Contracts applied to Evidence Notebook
- Healthcare Blockchain - Big-Data Pseudonyms on FHIR
- #FHIR and Bulk De-Identification