Supporting hard delete doesn't mean mandate hard delete :)

El sáb., 1 sept. 2018 a las 20:29, Thomas Beale (<thomas.be...@openehr.org>)
escribió:

> I continue to wonder what will happen when a cancer patient (perhaps in a
> moment of depression or disaffection with care) asks for the hard delete,
> gets better, then has a recurrence a few years later. What does the health
> system do when *all the notes are really gone*?
>
> I think a better solution is to create a digital locked room when such
> EHRs are put, one-way encrypted with a giant key provided by the patient.
> Then when they have regrets, they can ask - nicely - for their record to
> come out of cold storage.
>
> Another argument against total deletion is that a) the state has invested
> in helping sick patients and b) other citizens have a potential interest in
> health records belonging to those in the same major disease cohort, i.e.
> diabetes, cystic fibrosis, BRCA1 cancer etc. Numerous deletions are
> certainly going to compromise research that looks at longitudinal Dx v
> treatments v outcomes. Perhaps perhaps permanent anonymisation is a better
> solution in this case, with the original patient being given the new EHR id.
>
> I think GDPR has some way to go yet in healthcare...
>
> - thomas
>
> On 01/09/2018 18:57, Diego Boscá wrote:
>
> If a patient uses a private health provider then he has the right of
> taking all that information and move to another provider. In that case he
> will want a hard-delete of data. And I hope private health providers are
> also able to use openEHR ;D
> I think we should also review the "consent" mechanisms we have, as they
> probably should also be tweaked to comply with GDPR.
>
>
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