Interesting discussion. One of the major problems is that notions of personal privacy and patient access to records remain so controversial and dynamic from nation to nation that it is difficult to know if we can really come to any consensus except in the most abstract fashion.
I think, we can safely say that there are or will be entries within an EHR that 1. Should remain private to the patient 2. Should remain inaccessible to the patient whether for ? dubious professional reasons or more legitimately for the protection of others e.gchild protection concerns, violent patients The reasons why such areas exist (and their legitimacy for doing so) will remain extremely controversial. e.g In the UK, patients have the right to access all of their records unless there are compelling justifiable reasons to prevent this - comments by or about 3rd parties, public safety concerns or significant risk of harm to patient themselves. The examples discussed above re concealing concerns about a cancer diagnosis would be very unlikely to be legal in the UK. I agree too with William's argument that some medical record comments should not appear in the EHR at all. In the UK context however these could still not be concealed from a patient on request. With regards to OpenEHR, although it might be interesting to tease out some of the requirements using an archetype, I am pretty sure that most of this technically comes down to simple Role -based access controls, similar to the Windows Groups/Users security model. The Reference model allows for this for all LOCATABLE classes, which includes archetyped data, so in reality almost anything that needs to be 'hidden' can be. The human and technical management of such a role-based access system within the complex clinical domain is far from certain although both England and the Netherlands are attempting to do so via professional smartcards linked to sophisticated algorithmic determinations of each professional having a 'legitimate relationship' with the patient in many different contexts. I remain far from convinced that this is possible in the chaotic setting of much clinical practice where staff change very regularly, fulfil multiple roles, are highly mobile and often have compelling requirements to 'cheat the system' e.g. by sharing smartcards when one is lost or malfunctioning. Very interesting and challenging area but I don't think we should be trying to factor security issues into archetypes. Ian On Dec 15, 2007 10:28 PM, JP Freriks <jpfreriks at gmail.com> wrote: > William and Stef, thank you for your clarifying inputs. > > I'm not a clinician and as I said - the cancer situation isn't a good, > ethical or even legal example, as you've (rightfully) pointed out. > > But in general: are there situations thinkable where a health professional > doesn't want to disclose her/his comments to the patient? Because if there > are, it will be neccessary to put this in the EHR model. I've got the > intuition that especially when psychology comes in, or when a strategy is > needed to get the patient to act in the most healthful way, this might be > the case. Or isn't this (having private, subjective notes) how medicine > works, or should work, so that there's no need to make private notes > possible? > > Kind regards, > > Josina > > > > > > Stef Verlinden schreef: > > > Op 15-dec-2007, om 7:37 heeft Williamtfgoossen at cs.com het volgende > geschreven: > > In een bericht met de datum 14-12-2007 21:13:21 West-Europa > (standaardtijd), schrijft jpfreriks at gmail.com: > > Dear Josina, > > This question should perhaps be in the openEHR legal list serve :-) > > >From the clinical point of view I understand your question. However, the > two use cases differ 180 degrees. > > The cancer use case is according to Dutch law at the edge of illegality. > > I would even say it's over the edge > > A Doctor is not allowed to not enter objective patient data in the > record. He is allowed to keep personal notes on the cancer, but the moment > he enters this information as reason for a labtest it should be disclosed to > the patient. Anyway, the patronazing approach with respect to cancer has > been left for over 25 years now. > > Couldn't agree more. Although I can understand the idea of protecting the > patient this is really not up to a health care provider. To give you an > example: if a doctor seriously suspect something like cancer his/her > non-verbal communication will tell. For a patient the thought, that > something is so terrible that it must be kept hidden, can be more terrifying > than knowing that there is a change that disease x is present and this must > be excluded. I've witnessed several occasions where the patient was > 'protected' and in the end the all told that they had a terrible time (one > even for 6 weeks!!) and would have loved to know upfront what was going on. > > > > The information about a relative which comes to attention of a doctor > (health professional) must be kept confidential for the patient. Here it > would be illegal to disclose it, aside from the medical implications. > > the believing a patient or not can be handled in the problem oriented > medical record. Dutch GP's use subjective, objective, evaluation, plan. The > easy way forward is to list the subjective things a patient tells and to > balance that in the objective. > using the wording like i do not believe him/her is perhaps not appropriate > in the medical record. > > These are typical thing one would like to record as a personal note, but > one should be very careful with this. These personal notes can start living > a life on it's own. What, in my opinion, is the right thing to do, is to > 'confront' the 'patient' with this suspicion and note this and the response > of the patient in the record as objectively as possible. Even a doctor can > be biased by his/her personal believes:-) > > Cheers, > > Stef > > > > So if you want a technical solution, the two totally distinct use cases > need to be addressed differently. > > In a functional requitement set we made a separate section for care > professionals to keep confidential notes. This is then not attached to the > individual patient's record, but is only accesible to this one person the > doctor making the personal note (so not to other professionals). > > > William > > > Hello, > > I posted this message to the clinical mailing list, but think this should > be on the technical mailing list. Apologies if I'm not correct (and please a > further explanation about what is meant by 'technical' ;-) ) > > I've got a question about Author Information Mandate. (an issue also > brought up under 'Archetype production: Types of Archetypes' by Gerard > Freriks.) > > What is determined about the access control of information documented by > the physician that s/he wants to keep obscured from the patient? I believe > that the whole care process is characterised by a the subtle 'game' between > physician and patient, where the physician has its private thoughts and > goals (which he wants to document) but doesn't want the patient to know, or > only partly. For instance, a GP might be quite sure the patient has cancer > but doesn't want to alarm the patient right away so orders blood tests. > (There surely are medically more correct examples.) Others are i.e. > whether the physician believes the patient or not, or when the physician has > got extra information conveyed by a relative that the patient mustn't know > about. It is harmful to the care process and the physician-patient relation > if the patient has access to all of this. > Is there a way, in the RM for instance, that everything that is under > EVALUATION is kept hidden from the patient? I think this should be so. There > should be ?according to my opinion ? two separate parts in the EHR: a shared > part (open to, and access controlled by the patient) and a private part > containing the physicians evaluations and comments. This latter part should > only be made visible to the patient under certain (legal) circumstances, > where the patient can order to delete certain info. > My question: has this been taken care of right now? If so: how? > > Josina Freriks > > > > > Sincerely yours, > > dr. William TF Goossen > director > Results 4 Care b.v. > De Stinse 15 > 3823 VM Amersfoort > email: Results4Care at cs.com > phone + 31654614458 > fax +3133 2570169 > Dutch Chamber of Commerce number: 32121206 > _______________________________________________ > openEHR-clinical mailing list > openEHR-clinical at openehr.org > http://lists.chime.ucl.ac.uk/mailman/listinfo/openehr-clinical > > > ------------------------------ > > _______________________________________________ > openEHR-clinical mailing listopenEHR-clinical at > openehr.orghttp://lists.chime.ucl.ac.uk/mailman/listinfo/openehr-clinical > > > > _______________________________________________ > openEHR-clinical mailing list > openEHR-clinical at openehr.org > http://lists.chime.ucl.ac.uk/mailman/listinfo/openehr-clinical > -- Dr Ian McNicoll office +44(0)141 560 4657 fax +44(0)141 560 4657 mobile +44 (0)775 209 7859 skype ianmcnicoll Consultant - Ocean Informatics ian.mcnicoll at oceaninformatics.com Consultant - IRIS GP Accounts Member of BCS Primary Health Care Specialist Group ? http://www.phcsg.org -------------- next part -------------- An HTML attachment was scrubbed... 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