the "control" issue is an interesting one. In the US, it is generally acknowledged that the patient "owns" the information in the record, but not the record, per se. There would be no legal basis that I can think of, for the patient to assert control over where the records are physically stored. The law guarantees the patient reasonable access to a true copy of the info. and control over who else may see it (while it is *identified* as information about the patient... no control over "de-identified" data). With respect to access and general security, HIPAA is now the common floor in the US, with the occasionally stricter state and local regulations "trumping" the HIPAA Privacy and Security Rules.
BTW, a group of doctors here have introduced an even more problematic concept, they refer to as "stewardship". They are particularly concerned about data stores that will accumulate with e-Prescribing, and they do not want the information about what drugs are being prescribed going into marketing-oriented databases. The HIPAA Privacy Rule would certainly preclude that with patient- or provider-*identified* information. But HIPAA allows de-identified health information to be passed around freely. These docs seem to even want to retain a legal "stewardship" role with de-identified information... not likely to happen. Christopher J. Feahr, O.D. Optiserv Consulting (Vision Industry) Office: (707) 579-4984 Cell: (707) 529-2268 http://Optiserv.com http://VisionDataStandard.org ----- Original Message ----- From: "Thomas Clark" <[email protected]> To: "norbert Lipszyc" <irl at club-internet.fr>; "Christopher Feahr" <chris at optiserv.com>; <openehr-technical at openehr.org> Sent: Wednesday, August 06, 2003 10:54 AM Subject: Re: Distributed Records - An approach > Hi Norbert, > > Agree regarding the Patient's choice. It is a basic presumption on my > part and I too often forget to state it. > > Regional databases that maintain Patient records should be responsible to > the Patient who in turn dictates the 'terms and conditions, the major > loophole being prevailing law. However, the Patient should be able to > choose where to store the records (especially where paying to do so). > > Given a choice between the US and France I would choose to store them > in France because of the higher levels of security. > > Before deployment, and as soon as possible, these types of requirements > must be integrated in the design and affecting all levels. I just forget to > mention them. > > -Thomas Clark > > ----- Original Message ----- > From: "norbert Lipszyc" <irl at club-internet.fr> > To: "Christopher Feahr" <chris at optiserv.com>; <lakewood at copper.net>; > <openehr-technical at openehr.org> > Sent: Wednesday, August 06, 2003 1:23 AM > Subject: Re: Distributed Records - An approach > > > > The remarks of Christopher Feahr are very adequate, but they overlook the > > fact that in many areas, patients will have the decision as to where they > > want their records to be kept (trusted third parties for example, as in > the > > case of electronic signatures). therefore his conclusions are even more > > appropriate as they allow this freedom which is essential in many > countries, > > France in particular. > > Norbert Lipszyc > > ----- Message d'origine ----- > > De : Christopher Feahr <chris at optiserv.com> > > ? : <lakewood at copper.net>; <openehr-technical at openehr.org> > > Envoy? : mardi 5 ao?t 2003 17:28 > > Objet : Re: Distributed Records - An approach > > > > > > > Thomas, > > > This sounds workable to me. If I am understanding you correctly, we > > > need one (and only one??) registry in which anyone, anywhere (who is > > > authorized, of course) could look up a patient and determine which > > > "region" had master control at the moment over his record. If I'm a > > > provider living in the region where the records are primarily managed, > > > then when my system attempted to look up, say, the date of his last > > > Tetanus vaccination, it would find it immediately. If I was a provider > > > visited while the patient was traveling outside his "home" region, then > > > the same local query about his tetanus shot would tell me: "hold on a > > > minute, while we search all known registries to see where this guy's > > > home-region is... where his most current records will be located". ... > > > and then my region does a full record update from the current home > > > region? or just try to display his tetanus vaccination history? > > > > > > One of the problems alluded to is that different regions might be using > > > very different EHR structures. Thus a simple "record refresh" in region > > > B from the information stored in Region A is not so simple. It would > > > involve mappings at least, and possibly even data transformation. The > > > inability to assume an overarching authority seems to be the Achilles > > > heel. After a dozen record "movements" from one region to the next, > > > many little mapping and transformation errors may have accumulated to > > > thoroughly hose up the medical information in the patient's "master" > > > record. > > > > > > One way around the central record managing authority would be to have > > > VERY FEW regions... each with a well organized regional authority... who > > > come together under a global organization and work out a very tight > > > choreography for these refresh/hand-off operations. But this sounds > > > harder and no more likely to be created as one single authority such as > > > the UN imposing the requirements on all regions. > > > > > > I believe that the most critical point for global standardization and > > > what we must aim for (first) is the information in the record. When the > > > world has settled into that (something that will ALSO require a central > > > authority, but just for standardizing what the information elements > > > mean, not for choreographing complex record-merge operations), people > > > will gradually come around to the idea of moving to the next level of > > > system interoperability, with standard record structures. > > > > > > With only the information standardized globally, two large and > > > cooperative regions (say, US and Australia) could still choose to create > > > a US-Aus. information authority and orchestrate a high level of > > > interoperability for patients and providers floating anywhere within our > > > two countries. If the "functional regions" initially were more along > > > the sizes of counties and states, then we'd have a lot more hassle and > > > negotiating. So I would suggest the world start with the largest sized > > > regions that could be reasonably managed with the same EHR structure. > > > > > > The critical issue for all regional participants would be a strong, > > > competent regional authority... that operated in conformance to a set of > > > well defined "regional authority rules"... maintained by the UN?? > > > > > > Christopher J. Feahr, O.D. > > > Optiserv Consulting (Vision Industry) > > > Office: (707) 579-4984 > > > Cell: (707) 529-2268 > > > http //Optiserv.com > > > http //VisionDataStandard.org > > > ----- Original Message ----- > > > From: <lakewood at copper.net> > > > To: <openehr-technical at openehr.org> > > > Sent: Tuesday, August 05, 2003 12:11 AM > > > Subject: Distributed Records - An approach > > > > > > > > > > Hi All, > > > > > > > > With a background in fault tolerant computing I have a built-in > > > penchant for > > > > distributed files that are exact/backup copies of a master. Works > > > wonders > > > > for > > > > financial transactions. > > > > > > > > I don't believe that this model fits EHRs especially since one can > > > conceive > > > > of > > > > parallel, e.g., close proximity in time, operations directed at > > > > modifications > > > > originating at geographically distant locations.These operations, even > > > they > > > > occur > > > > across town (Clinic and distant Lab) create problems for record > > > management. > > > > > > > > Tying record management to physical location is not a solution. Remote > > > > medicine complicates this immediately. However, a constant occurs > > > > immediately, > > > > presuming that we do not have to deal with human clones (put a > > > <dash-number> > > > > in the ID). The Patient ID is it. Traditional approaches would require > > > that > > > > in all > > > > the world there is only one unique person being considered. > > > (hopefully). > > > > > > > > Hence each region could contain entries on residents, transients, > > > visitors. > > > > tourists, etc. that somehow make contact with healthcare > > > > facilities/Practitioners > > > > in the region. > > > > > > > > Registering the IDs and updating the regional databases requires that > > > only > > > > those > > > > regional Patients be administered. > > > > > > > > National and international databases can be established that will > > > receive > > > > and store > > > > regional registrations of Patient IDs, allowing one to scan these > > > databases > > > > to > > > > determine who holds regional records on individual Patients. One can > > > then > > > > retrieve all the records or part of them. This substantially reduces > > > the > > > > need for > > > > storage and bandwidth to manage records on a global scale. > > > > > > > > I presume that there is no need to have matching records for > > > individual > > > > Patients > > > > in all regions this Patient has been in an made contact with the > > > healthcare > > > > industry. If I take a cruise on the Rhine and require medical > > > attention it > > > > makes no > > > > sense to burden whatever region manages that healthcare system with > > > anything > > > > more than they had a tourist with a weak stomach. > > > > > > > > It would be nice to have a distributed registry that would show where > > > I had > > > > to > > > > stop off and get some help. At least the Public Health personnel would > > > > appreciate > > > > it. > > > > > > > > The important thing to me is to be able to access all the known > > > records and > > > > bundle them in a way that is appropriate for the healthcare personnel > > > > handling > > > > my latest complaints. > > > > > > > > BTW: The Fault Tolerant/Highly Available Systems can make sure that > > > the > > > > information requested is available but the applications have to > > > structure > > > > it. > > > > > > > > -Thomas Clark > > > > > > > > > > > > - > > > > If you have any questions about using this list, > > > > please send a message to d.lloyd at openehr.org > > > > > > - > > > If you have any questions about using this list, > > > please send a message to d.lloyd at openehr.org > > > > > > > - > > If you have any questions about using this list, > > please send a message to d.lloyd at openehr.org > - If you have any questions about using this list, please send a message to d.lloyd at openehr.org
