Think the GDPR already provides many answers...:-), see at
https://gdpr-info.eu/art-17-gdpr/
In the case of a person ("data subject") not being able to take control;
normally another person is appointed to do so on behalf of the "data
subject". So the same law applies..
Cheers, Jan-Marc
Op ma 3 sep. 2018 om 13:50 schreef Bert Verhees <bert.verh...@rosa.nl>:
> It would be a bad thing to let all patients be restricted in their rights
> because one patient, suffering in the past from depression and having a
> recurring cancer can get into problems. Some people are emotionally
> unstable, they need protection. I don't know the best way, but I would
> think of something as the digital locked room. (mentioned here below), but
> this should not default happen for all patients.
> It is, btw, possible to switch digital locked rooms also when switching
> data to a new PHR provider. So that all data remain to be maintained at the
> company the patient chooses.
>
> For research purpose, the must also be solutions. People can allow
> voluntary access to their data by researchers, this is how it works now. So
> in the PHR situation, researchers go to the PHR providers instead of the
> clinicians. Not many people will delete all their data without transporting
> them to a new PHR provider (if someone wants to do, you can build a net of
> safety measures, confirmation time, etc), and for those two or three who
> still destroy all, researchers will not have data.
>
> Bert
>
>
> Op za 1 sep. 2018 om 20:29 schreef Thomas Beale <thomas.be...@openehr.org
> >:
>
>> 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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>>
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--
Regards, Jan-Marc
Mobile: +31 6 53785650
www.medrecord.io
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