Aw: Re: Re: Scenarios for change type "deleted"

Sun, 05 Nov 2017 09:29:08 -0800

Hi Karsten,

a) these repos are not the primary sources of the data. Hence, the deadlines do not apply!

b) Implementing such a process was demanded by the state data protection commissioner. I'm not sure how realistic this would be, but such a network heavily relies on patients' trust. If there is doubt, you lose.

Besides: we implement openEHR in a distributed data warehouse scenario. Most data will be integrated locally from application systems. To be able to share data with other sites, we need to consider patients' consent. If a patient withdraws, we don't have any purpose to keep this 'secondary use data' within the data warehouse/openEHR system. Besides the legal questions, being able to physically delete data from such a database is also necessary for practical development and maintenance reasons.

For operative systems, this is a whole different story. I recently was told that physically deleting records should not be possible when you want your software to be certified as a medical product according to German law.

Birger
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Am 05.11.17, 5:54 PM, Karsten Hilbert <Karsten.Hilbert@gmx.net> schrieb:
On Sun, Nov 05, 2017 at 05:31:50PM +0100, Birger Haarbrandt wrote:

> just a short remark: we were involved in a regional EHR (in the sense of a
> health information exchange network) project in the state of Lower-Saxony,
> Germany. While this might be a different use case, we clearly had to be able to
> physically delete patient data from all IHE XDS repos and registries in the
> case of a patient's withdrawal.

a) The repositories were likely not the primary repositories
intended for immediate clinical care ?

in which case the deadlines don't apply

b) had you suspected that a withdrawing patient intends to sue
the health information exchange network you would likely have
had the right to retain data regardless

But, yeah, physical deletion certainly seems necessary even
if only, say, 50 years post mortem ...

Karsten
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