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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