Intellectual Property Rights issues are going to loom large for the EHR, and many other aspects of how we provide clinical care, education and conduct research.
At the Internet2 Virtual Monthly Briefing yesterday Lawrence Lessig's Opening Plenary to TERNEA in Ireland was rebroadcast. I believe the topic of a Creative Commons (as Dr. Lessig termed it "the NO Lawyer zone ;-)) is something that is very relevant to the openEHR philosophy. Is it time to get out of our "smoke filled rooms" and start being creative? See the links for Dr. Lessig and the Creative Commons at http://www.internet2.edu/activities/html/20020611.html Ok, so perhaps this a very US centric viewpoint...but still we have to start building applications at some point. A place to share intellectual property and allow for creative thoughts to evolve through open collaboration might be a notion that we could leverage through use of the Creative Commons philosophy and resources. -Mary At 10:58 AM 6/12/2002 +0200, Gunnar Klein wrote: >Dear EHR friends, > >I agree very much with David Guest's opinion that it less fruitful to speak >about ownership of information though it is done a lot in the debate in many >countries. It is clearly different from access rights which Gerard is >speaking about and like David is saying for Australia, in Sweden there is >usually very little point in trying to distinguishing differnt parts of >records as less relevant for the patient. i certainly think the >classification suggested by Gerard in four types of data does not hold. > >Different from the access rights themselves are the rights to decide access >rights which is quite complicated and varies in different situations. In >many countries today, the patient concerned always has an overriding right >of deciding that "his/her" record should be released for reading to a >specific person or any person. We have an interesting debate in Sweden right >now on the issue if it is possible to ask the patient to give consent to >access to records not yet recorded. Some very official legal experts claim >it is not allowed according to the secrecy act to give a permission to an >unknown piece of information for the future whereas other legal advisors to >healthcare organisations are de facto supporting what is built in some cases >where the patient gives the consent to future relaeases of information to be >recorded in the future. One example being a centralised list of all currrent >medication. For standards we have to accept that this type of serrvice will >be required by some user groups whereas in other legal contexts it will not >be possible. > >Yet another aspect of "ownership" is the issue of destruction of the whole >or parts of an EHR. In our legislation as I believe in many others no >healthcare provider has that right by itself, only a special national body, >in our case the National Board of Health working directly under the ministry >of Health can make a decision that allows it and in fact mandate that it >shall be done usually based on a request by a patient that find that errors >have been made or harmful opinions expressed by less careful professionals. >Since many EHR systems installed do not really have a function to do a >removal of data, these rare situations cause special consultancy services by >the EHR manufacturer often at high costs 5-15000 EUR. > >Of course a standard requirement shoudl allow for deletion but it is not a >matter for EHR communication. However, the important thing to note is that >when records actually shall be deleted it shlould be all copies also sent to >other providers. Thus, the record need to store logs of record transfers and >there may be a need to communicate electronically the instruction to the >recieveing end to delete. However, from a Swedish point of view these >deletion issues are so rare that it is not an important requirement that >this should be communicated electronically, one reason is that the >instruction to another system need to convey also the proof (a paper >decision for now and a long time to come) of the Authority decision that the >record can/shall be deleted. > >Best regards > >Gunnar Klein >----- Original Message ----- >From: "David Guest" <dguest at bigfoot.com> >To: "Gerard Freriks" <gfrer at luna.nl> >Cc: <openehr-technical at openehr.org> >Sent: Wednesday, June 12, 2002 7:44 AM >Subject: Re: The concept of contribution - first post :-) > > > > Hi Gerard > > > > I have been sitting here in the OpenEHR since February and all of sudden > > last month someone put through a cyberhighway and the din from traffic > > has increased enormously. For those who have transferred from other > > lists I apologise if my ponderings are too facile or have already been > > covered ad nauseam. > > > > I have never understood the concept of data ownership. I can understand > > the ownership of things, like hard drives and CD-ROMs, but not data. > > Data seems to me like a mathematical algorithm or poetry. You can create > > it, you can interpret it and you can store it. You can also send it on > > to someone else and these days the electronic copy you send is the same > > as the original. > > > > Medical data is collected from patients by health care professionals. > > Each of them has specified read / write permissions but, at least in > > Australia, not deletion rights. If you introduce third parties (HMOs, > > governments, employers) you also need to define their rights. > > > > Having worked under the Australian "open system" since a change to the > > Privacy Act six months ago, I find that there are hardly any times when > > you need to withhold information from the patient. I cannot see the > > point in restricting access to "private" opinions. My letters of > > referral, which the patient can read in full, contain a copy of my > > clinic notes. The consultant pyschiatrist soon fathoms out my diagnosis > > of "voices for investigation" and the patient is painfully aware of the > > symptom. > > > > I do agree that any appendings to the record requested by the patient > > have to be made by the health professional. After all, it is "your" > > record. :-) > > > > David > > > > > > > > Gerard Freriks wrote: > > > > >Agreed. But ... > > > > > >"data ownership by the pati?nt" will need some consideration. > > >I know that most laws in most countries are politically correct and give > > >rights to patients. But never ownership. Most often a right to inspect, > > >review, remove, and add information. > > >In my way of thinking, the author is the owner and one responsible. The > > >pati?nt has the right to see his information and under certain conditions >is > > >able to remove it or change it. > > >But what is "Information"? > > >I think that there are levels or types of information: > > > > > >"Private Opinions" consisting of personal interpretations of raw data; > > >"Official Statements/opinions" consisting of professional interpretations >of > > >raw data; > > >"Raw uninterpreted data" admitted to the EHR; > > >"Raw interpreted data" not admitted to the EHR, (yet) > > > > > >Pati?nt have rights towards the last two, but none with the first. > > >Healthcare providers must have the facility record private unripe >thoughts > > >about the pati?nt and its disease process. > > >The author os the information is acting as the proxy of the pati?nt. > > >Patients should have no direct access to all the information. Only to > > >selected portions of the " Official opinions". The preferred way to >inspect > > >and change is via the responsible proxy. > > > > > > > > > > > > - > > 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 --------------------------------------------- Mary E. Kratz Manager, Internet2 Health Sciences 3025 Boardwalk Ann Arbor, Michigan 48018 V: (734) 352-7004 C: (734) 604-9438 F: (734) 913-4255 - If you have any questions about using this list, please send a message to d.lloyd at openehr.org
