Data Types
Clem McDonald wrote:
>What Ed has described is the proper way to bet on the number that is not there
>when you have to for statistical purposes
>
>You ahve to assume some complete date for the purpose of the statistics.
>Taking the Mean date for hte month or the mean month for the year is the best
>you can do. (We have used hte first of hte month and the first of the year and
>that DOES produce a bias
>
Right, so we have followed the first approach in the model:
day missing from date => synthesize 15th / MM /
day and month missing from date => synthesize 30 / JUN /
We also added the function
possible_dates:INTERVAL
For a missing day => synthesize {1 / MM / - days_in_month(MM) / MM
/ }
For a missing month => synthesize {1 / 1 / - 31 / DEC / }
These functions can be used to catch the fuzzy dates when querying. I
guess there will be a skew when multiple successive queries are run on
the same data because fuzzy dates will match more queries, so there must
be a better way to do this. Methods I can think of include:
- assigning a random date to each fuzzy date. This is hard, because as
more dates are added to the system, you have to keep monitoring them to
be sure that you are still setting the fuzzy ones to a truly random value
- using the interval method above, but when doing a series of queries,
remembering when you already have matched an item, to prevent double
inclusion.
Do Regenstrief or Duke have any method for making fuzzy dates match queries?
- thomas beale
>
>
>As it turns out the Social security adminestration and the Tumor registry
>systems do the same thing (that ed reccomends) when the specfics are not
>known.
>
>Thomas Beale wrote:
>
>>William E Hammond wrote:
>>
>>>Time to weigh in on fuzzy dates. We have been using fuzzy dates at Duke
>>>and in TMR since the early 70s for just the reason Sam states. Often
>>>patients will know on;y the year, more frequently the month and year only
>>>but no date. We discover that partial data is much more useful than no
>>>data.
>>>
>>>So we used fuzzy dates. The fuzzy dates are displayed with ?? for the
>>>unknown parts. Whenever we sort, a fuzzy day sorts to the 15th of the
>>>month, and a fuzzy year sorts to July.
>>>
>>Ed, presumably you meant "a fuzzy month". This is the design we have
>>used, so that's encouraging (when can we install it at Duke?-).
>>
>>>Statisticians are generally unhappy
>>>with fuzzy dates and want to throw them out.
>>>
>>I am not convinced that the statistical arguments are so great - I can
>>see that there would be a skew towards things that happen more often on
>>the 15th of the month, due to the day-less dates in the system, but I
>>can't think of any clinical research that would be looking at that. Are
>>there any studies on the dangers of fuzzy dates in statistical analysis?
>>
>>>But every one seems happy
>>>when someone records the date of onset for hypertension as July 4, 1976.
>>>Where is the hour, minutes and seconds. I argue that fuzzy dates are
>>>acceptable and valid data points and should be used in statistical
>>>analysis.
>>>
>>>In a datetime stamp, unknowns are stored as 00. Thank goodness, we use
>>>another saymbol for a totally unknown date.
>>>
>>>Ed Hammond
>>>
>>- thomas beale
>>
>>-
>>If you have any questions about using this list,
>>please send a message to d.lloyd at openehr.org
>>
>
>--
>Director, Regenstrief Institute
>Regenstrief Professor of Medical Informatics
>Distinguished Professor of Medicine
>Indiana University School of Medicine
>1050 Wishard Blvd RG5
>Indianapolis IN 46202-2872
>Phone: 317/630-7070
>Fax: 317/630-6962
>URL: www.regenstrief.org
>
>
>
>
--
..
Deep Thought Informatics Pty Ltd
mailto:thomas at deepthought.com.au
open EHR - http://www.openEHR.org
Archetype Methodology - http://www.deepthought.com.au/it/archetypes.html
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Re Ownership
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 > actually, I agree - I just used the word as shorthand for being able to exercise rights over the information, i.e. being the moral owner. As a technological concept, it is not useful. >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. > This would surely have to depend on some idea of classification of information. You could sensibly give consent to a certain set of access rights for current medicationa and therapeutic precautions information; when more items in these categories are recorded, the patient probably does not want to have to keep restating their preferences. But for new categories of information it should probably be different. The trick is to devise a way of categorising health data from a user point of view... >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. > now I'm smiling. I knew there was a reason why CEN, GEHR and all the other works said you can't delete anything ;-) >Of course a standard requirement shoudl allow for deletion but it is not a >matter for EHR communication. > Right; it is a system function, and a governance issue >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. > this is one way of doing it but i suspect there are better ways which have not been designed yet, due to the unknown factor of how EHRs in the future will be distributed and shared - in community computing infrastructure? In a cerntralised infrastructure? >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. > I suspect this should also be true for requests for prior versions of information, when only the latest is of interest to clinical care. - thomas beale - If you have any questions about using this list, please send a message to d.lloyd at openehr.org
Data Types
Douglas Carnall wrote: >... > >If I see a patient who subsequently turns out to have thyrotoxicosis, but do >not record the presence or absence of certain key clinical findings (e.g. >pulse, weight, tremor), and do not order thyroid function blood tests, then >there must be doubt if I even considered the diagnosis. > >Abstracting clinical data out of context is problematic. > this is certainly our point of view. We would say: - record what is stated measured, checked etc - do it in such a way that it works a) for patient care b) for decision support c) for other uses, in that order. - assume that physicians and other health workers are thiking people, and will in general use data to make inferences leading to care decisions; don't try to record data in a way that makes presumptions about this, or prejudices the thinking process of the clinician That said, there is still the technical challenge, at the reductionist end of the data-recording spectrum, of when to try an record data items in structured form (so they are computable) and when not to. Structured data is much better for: - computation, especially decision support - interoperability, since every communicating party can agree on the one standard for what a "Quantity" etc looks like However, many people, including myself, have strong reservations about recording very unreliable data (either partially specified or from a known/suspected unreliable source) in structured form, particularly if values are synthesized to make it fit the requirements of creation of the structured data object in question. >I know it's a windup to make this statement to this list, but we now have >enough cheap gadgets and computing power at the desktop to model a paper >record graphically. Maybe this would be a good starting point for a clinical >record that truly gave first priority to the clinicians using it. > >Would the open-ehr archetypes provide the building blocks for a designer who >wanted to take this approach? > first thing to say is that CEN/GEHR/openEHR approaches do not predispose (we hope) the visual appearance of EHRs in applications to any particular model; there is no reason why the clinician's view of the record on the screen should not look like the paper record they are used to. Once you start looking at forms for recording information in the paper record, it is clear that these forms often represent a) a long-term refinement of important data items for the purpose, and b) a long-term refinement of the arrangement of the questions and way of recording answers. So in many cases, forms will be a starting point for archetypes. But I should stress that archetypes (as we have defined them in GEHR/openEHR) are constraint models of data, not models for forms as such. Now consider a form like the diabetic interview form in our current project. The first time interview form has boxes for information that clinicians recognise as being in various well-known categories, such as lifestyle (the smoking, diet and exercise questions), family history (diabetes in the family), current medications, and so on. We envisage archetypes primarily for structuring data in the record, so there will be archetypes for each of these well-known categories of information. This means that if a different clinician uses an unrelated form for the patient, which also asks for (probably different) data to do with lifestyle, family history and so on, what we want are archetypes for lifestyle, fam hist etc, which cover the data being asked for in each place. Over time, the design of such archetypes crystallises, and specialisations may be created for certain kinds of patients. Where does this leave forms? One of the reasons I / DSTC have proposed a more formal concept of "contributions" is so that data gathered on a form, whcih might well be committed to different parts of the EHR according to various thematic (data-oriented rather than scren-oriented) archetypes, can be re-assembled easily into the original form. Secondly, there are various people thinking about "visual archetypes" and stylesheets for archetypes, and I have seen a system in Europe which I think could be integrated with the GEHR archetypes to build screen forms whose elements and element groups are based on archetypes, but where the overall design of the screen form resembles something the clinicians are used to seeing. It is early days yet - thomas beale - If you have any questions about using this list, please send a message to d.lloyd at openehr.org
Re Ownership
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" >To: "Gerard Freriks" >Cc: >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
