Paul Juarez wrote: > I've been following these discussions with a lot of interest. So I > guess it's time for me to put in my two bits. While I've seen a couple > of references to ownership of the medical record, I havent seen anything > definitive that defines it (e.g. patient, provider, legal custiodian of > record, etc., or some combination). It seems like this question needs > to be clearly agreed on before issues of access can be identified. (It > also could be a partial solution to distinguishing between the terms > EMR, EHR, EPR). HIPAA aside, it seems that there may be some different > legal issues about ownership that would also have implications for > access. Any thoughts? > > > >>> "Bill Walton" <bill.walton at jstats.com> 04/28/03 12:32PM >>> > Hi Sam, > > > > BW: This is a really interesting problem space to me. I've been > studying HIPAA (the Health care Information Portability and > Accountability Act) and have become fascinated with the discussion over > how best to balance the needs of the various parties involved in the > provision and payment of healthcare services so as to improve the > quality and decrease the cost of health care here in the U.S.. Talk > about a non-trivial problem! Interestingly, it looks to me like all the > nonsense can be traced back to the health record and some fundamental > questions about who owns it, who controls access to it, etc. Thanks > again for sharing. Hope to hear from you soon. > > > > SH: I agree - it is fascinating. Can I point you to our (original > work on this - quite philosophical) which I wrote with Len Doyal - a > professor of medical ethics in London. > http://www.chime.ucl.ac.uk/work-areas/ehrs/GEHR/Deliverables.htm#D8 > > I hate to ask this, but is there one deliverable you could point me to > that contains the philosophical stuff? I'm up to my eyeballs right now > and I can see there's a whole bunch of good stuff at the Chime site on > GEHR that I'll have to get to asap. > > Thanks, > Bill The ownership issue of medical information was a 10 years discussion in Europe. Several projects we have been involved in tried to analyse ethical and legal implications of personal medical information. The interpretation of those issues is very different from country to country, from region to region, from institution to institution and even from scientists to sientists. In all official documents of the European union sich as, e.g. the EU Data Protection Directive from 1995 which meanwhile has been implemented in all EU Member States, avoids the term ownership. In many circles, we talk about a comon responsibility of doctor and patient within the trustworthy doctor-patient relationship. Therefore, also the practical realisation of corresponding activities are handled different. Many Healthcare Establishments hand over the original materials to the patient. In the other hand, legislation for documentation requirements and liability issues requires the originals with the institutions. As you can see, the responsibility paradigm seems to be a logical way - and all standards work items orient to the responsibility paradigm. This means on the other hand, that without consent of the patient (which could be defined at action level or at role level), the doctor has no right to access and to communicate patient's personal information.
Best regards Bernd - If you have any questions about using this list, please send a message to d.lloyd at openehr.org
