Data Types

[Sam Heard]

Tim

This is definately a mistake - amny disorders have a date of onset that is
fuzzy from a month point of view but is worthwhile - last Pap smear, last
attendance at Ophthalmologist etc. The point about a fuzzy date is that it
is helpful for human interpretation - a month that a spouse died will be
very worthwhile even if a day is not known - when chasing records at another
centre - knowing that a date is accurate or not will overcome a lot of
frustration.

SAm


> -Original Message-
> From: owner-openehr-technical at openehr.org
> [mailto:owner-openehr-technical at openehr.org]On Behalf Of Tim Benson
> Sent: Friday, 7 June 2002 6:19 PM
> To: Thomas Beale
> Cc: openehr-technical at openehr.org
> Subject: Re: Data Types
>
>
> Tom,
> I do not think that structure can be justified if that structure
> is unlikely
> to add either value or safety down the line.  So in the situation where we
> are not able to rely on a time as being either a strict point in
> time or an
> interval is likely to create semantic problems.  Unless you can rely on
> strict chronological listing it is unhelpful to try to give spurious
> precision.  So my suggestion is that such fuzzy dates should be put into
> free text only and all dates associated with any entry should only be the
> ones we can rely on, such as date and time of entry.
>
> What is more precise: "the first of the month, but do not remember which
> month", "the night it rained" or "the morning that the kids were late for
> school"? To me there is no point in using anything other than
> free text for
> any of these.  Julian dates can be very useful, but not all date
> information
> fits the simple model and errors are made when we try to force it in.
>
> We should always have a time stamp for computer entry, which should be
> flagged if this is the only Julian-type date information that is available
> (and must be used with great caution along side free text data).
>
> Tim
>
> --
> Tim Benson
> Abies Ltd,  24 Carlingford Road, London NW3 1RX, UK
> +44 (0) 20 7431 6428, tb at abies.co.uk
>
> > From: Thomas Beale 
> > Organization: Deep Thought Informatics Pty Ltd
> > Date: Tue, 04 Jun 2002 19:59:43 +1000
> > To: Tim Benson 
> > Cc: openehr-technical at openehr.org
> > Subject: Re: Data Types
> >
> >
> >
> > Tim Benson wrote:
> >
> >> Surely the criterion for any structured data is whether
> another application
> >> is expected to use that structured data in a way that (a) adds
> value and (b)
> >> is safe.  If either (a) or (b) are not true then structure
> simply adds cost
> >> and complexity without benefit.
> >>
> > Tim, I agree with the premise; but what is your solution in this case?
> > The structure would only change in a very trivial way i.e. by adding a
> > flag which means "day_unknown". Are you asking for a use case which
> > proves that this should exist? I agree - that's what we need. Tim has
> > provided the simplest of all - if the patient said it, we should record
> > it. Is it enough - I don't know...
> >
> > - thomas beale
> >
> >
> >
>
> -
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> please send a message to d.lloyd at openehr.org
>

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The concept of contribution

[Sam Heard]

Henry

Thanks for the 'dumb' contribution. I hope that you can see that openEHR has
approached the problem in a way that will allow the sort of scenarion that
you have painted as well as a more complex scenario with a distributed
record - or even the big brother one record for each patient held centrally.
The reason is that we cannot predict the size of future work units or the
technology that will be around - only that the technology should not dictate
the work practices - only support them.

Cheers, Sam

> -Original Message-
> From: owner-openehr-technical at openehr.org
> [mailto:owner-openehr-technical at openehr.org]On Behalf Of Li, Henry
> Sent: Tuesday, 11 June 2002 11:36 AM
> To: 'openehr-technical at openehr.org'
> Subject: FW: The concept of contribution
>
>
>
>
> -Original Message-
> From: Li, Henry
> Sent: Tuesday, 11 June 2002 9:10
> To:   'Denis Nosworthy'
> Subject:  RE: The concept of contribution
>
> Hi
>
> I am not a real techno but I understand and deeply interested in the
> discussion. I had this vision of a real good electronic health
> record. It is
> one own by the patient, carry by the patient, and presented to the health
> care provider (whoever they are) by the patient (all over the world). The
> Browser and XML or its improved version whatever it may be in the
> future is
> the way to go.
>
> This is the process
> A patient visits a care provider and presents his e-card as a proof of
> consent to treatment
>
> The health care provider loads up the health record into the browser and
> download the info into whatever system he is using (this applies
> to Hospital
> as well), the health care provider can also choose to discuss the patient
> with other health profession on line through the web.
>
> When the patient leave the care provider, it is the responsibility of the
> care provider to upload whatever he has done to the patient back to the
> e-card and the patient goes away. Any subsequent test results
> etc, it is the
> responsibility of the health care provider to contact the patient to have
> the data put into the patient's e-card. (the patient can choose
> not to do so
> - but it is of course to the patients benefit to do so)
>
> The benefit of this is at any one time, the patient is the only
> person that
> has a complete health history of himself and he owns it. (Solve the
> ownership and privacy issue) After all, currently, the health
> care provider
> will only know as much as what the patient choose to tell them anyway.
>
> New industry will start up to take care of the situation and provide all
> sorts of support to the e-card holders. These services include how to
> download, how to backup or even help retrieve data in emergency
> etc. etc. -
> god knows what will come up in the commercial world. Good or bad, no big
> brothers.
>
> When the patient dies, he can choose to sell his e-card for research
> purposes and has money to bury himself - no burden to next of kin.
>
> The reason I write these is that, I think I contribute as from a
> dumb user's
> point of view, may be it has some bearing on the design and the
> structure of
> the 'database' or 'rules' or whatever you may call it. The only
> consideration will be where to put  different types of health data in the
> structure. It is upto the provider system to come up with the download and
> upload method.
>
> Cheers
> Henry Li
>
>
>
>   -Original Message-
>   From:   Denis Nosworthy
> [mailto:Denis.Nosworthy at swsahs.nsw.gov.au]
> 
>   Sent:   Tuesday, 11 June 2002 8:37
>   To: 'Sam Heard'; openehr-technical at openehr.org
> 
>   Subject:RE: The concept of contribution
>
><< File: InterScan_Disclaimer.txt >> Sam,
>
>   Well said.
>
>   We have for many years been operating under the ideas of
> 'interoperability'
>   and whilst tools such as HL-7 have been very successful in
> getting us
>   through these times the issue of EHR interoperability will
> be something else
>   yet again. Source system interoperability is one thing
> however (mostly
>   constrained within a controlled environment) but receiving
> systems such as
>   EHRs will have to be truly interoperable if they are to be
> effective.
>
>   The EHR is not a messaging system as some would have us
> believe (in some
>   incantations it could be seen to be just that) but it must
> be a system that
>   clinicians can rely on to be accurate and reflect 'real
> life'. If it has to
>   rely heavily on 'real time' messaging then the vagaries of
> our
>   telecommunications systems will have a significant impact on
> that level of
>   acceptance
>
>   -Original Message-
> 

Data Types

[Thomas Beale]

Tim Benson wrote:

>Sam, I think you have misunderstood me.  Human beings love complex patterns,
>but computers hate them.  Of course you must keep the richness of "the day
>before the big storm", but you should not try to put that sort of thing into
>a Julian date field.  Let people do what they are good for and let us use
>computing for what it is good for.  The fact is computers do not like
>ambiguity.  The question is always what do we want to use this info for?  Is
>it to structure a record in chronological order or what?
>
>Tim
>
I think Tim's general considerations are correct (or at least I agree 
with them ;-) - the reasons to use structured v non-structured data 
items (or any items for that matter) are:
- if you have enough raw data to build the structured item
- if the information is to be used in computation

I think these principles are correct.. but we do need to understand them.

The general design of the openEHR data types follows these principles in 
that you cannot create any item unless you can provide the required data 
to the creation routine; i.e. you can only create valid data items, be 
they quantities, terms or whatever.

However, there are times when you don't quite have all the raw data, but 
a) you have enough to build a reasonable version of a data instance, and 
b) you want to be able to compute on the instance. Partial dates and 
times fall into the category, and this is why we have created separate 
classes of them. If you have year and month only, you cannot create a 
valid DATE instance, but you can create a valid PARTIAL_DATE instance, 
which will still satisfy the computational requirements of DATEs (by 
synthesising reasonable mid-month dates, etc)

For data which is really quite unreliable, we suggest that it be 
recorded as narrative text, as Tim mentioned earlier.

Contrast this with the HL7 data type approach where every type and every 
attribute and function result can be Null indicating it is unknown. The 
idea of this (according to Gunther) is so that no matter how little you 
know, you can record it in structured form. We can think of this design 
approach as a completely fuzzy approach. As an example, you can have a 
IVL (interval of time) with unknown low and high values. I have 
noted that this makes it nearly useless for computation, since you can't 
even call the contains(a_time:TS) routine - well you can, but you will 
get back "UNK" (unknown) as a value.

I see dangers in this approach:
- the specification is more complex, since the semantics have to include 
the case where each and every attribute might be Null. Complex 
specifications are more likely to lead to implementation bugs
- software will be more complex because it has to be able to handle UNKs
- unreliable raw data is being used to create structured data instances 
whch might be treated by software as being more reliable than they 
really are
- if there is software operating on the data that does not understand 
the possibility that UNK can be returned from function calls, it is not 
clear that the data is safely processable

I can see the theoretical interest of recording unreliable data in a 
structured way, even if half of it is missing, but practically I don't 
think that it is a very useful thing to do, except in exceptional (and 
common) cases like date & time. Gunther says that people may come back 
and fill in the missing bits, but in general I think this is quite 
unlikely - no-one has time. (Exceptions might be partial data gathered 
in A&E or similar situations).

Hence we have opted for a simpler approach:
- in general data types are designed in a pure fashion - no general 
facility for unknown elements
- special data types for partial data are specified; the advantage of 
this is that the semantics of these types are clear
- Null markers are recorded,  not inside data instances, but where they 
are used, e.g. in the ELEMENT class in the EHR reference model

thoughts?

- thomas beale


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FW: The concept of contribution

[Thomas Beale]

Li, Henry wrote:

>This is the process
>A patient visits a care provider and presents his e-card as a proof of
>consent to treatment
>
>The health care provider loads up the health record into the browser and
>download the info into whatever system he is using (this applies to Hospital
>as well), the health care provider can also choose to discuss the patient
>with other health profession on line through the web.
>
>When the patient leave the care provider, it is the responsibility of the
>care provider to upload whatever he has done to the patient back to the
>e-card and the patient goes away. Any subsequent test results etc, it is the
>responsibility of the health care provider to contact the patient to have
>the data put into the patient's e-card. (the patient can choose not to do so
>- but it is of course to the patients benefit to do so)
>
So now there are copies of the EHR a) on the patient's card, and b) on 
the system. Over time there will be many copies of the EHR, some more up 
to date than the copy on the patient's card. What's the point of having 
a copy of the EHR on the patient's card?

>The benefit of this is at any one time, the patient is the only person that
>has a complete health history of himself and he owns it. (Solve the
>
This won't be true - over time I doubt that anyone will have a complete 
history of the patient - they will all have partial histories, which 
admittedly is the curret situation, but I don't see any utility in 
having yet another copy of part of the EHR on the card.

Re: the fear of big brother - I agree this is real; but the solutions in 
my opinion lie in:

- distributed computing systems
- data management by clinical and/or public bodies (non profit 
enterprises in other words)
- strict governance of information and enforcement of consent
- data ownership by the patient

- thomas beale



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Data Types

[Thomas Beale]

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


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Subject header for this list

[Eddy Cheung]

Hi all,

May I suggest that if this list can add a prefix to the email's subject 
line?  eg. [OpenEHR-Tech] 

I am not sure about the rest of you, but this would certainly make my 
life easier in sorting my incoming email.

Thanks,
Eddy

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FW: The concept of contribution

[Tony Grivell]

At 11:34 +1000 12/6/02, Thomas Beale wrote:
>Li, Henry wrote:
>
>>This is the process
>>A patient visits a care provider and presents his e-card as a proof of
>>consent to treatment
>>
>>The health care provider loads up the health record into the browser and
>>download the info into whatever system he is using (this applies to Hospital
>>as well), the health care provider can also choose to discuss the patient
>>with other health profession on line through the web.
>>
>>When the patient leave the care provider, it is the responsibility of the
>>care provider to upload whatever he has done to the patient back to the
>>e-card and the patient goes away. Any subsequent test results etc, it is the
>>responsibility of the health care provider to contact the patient to have
>>the data put into the patient's e-card. (the patient can choose not to do so
>>- but it is of course to the patients benefit to do so)
>>
>So now there are copies of the EHR a) on the patient's card, and b) 
>on the system. Over time there will be many copies of the EHR, some 
>more up to date than the copy on the patient's card. What's the 
>point of having a copy of the EHR on the patient's card?
>
>>The benefit of this is at any one time, the patient is the only person that
>>has a complete health history of himself and he owns it. (Solve the
>>
>This won't be true - over time I doubt that anyone will have a 
>complete history of the patient - they will all have partial 
>histories, which admittedly is the curret situation, but I don't see 
>any utility in having yet another copy of part of the EHR on the 
>card.
>
>Re: the fear of big brother - I agree this is real; but the 
>solutions in my opinion lie in:
>
>- distributed computing systems
>- data management by clinical and/or public bodies (non profit 
>enterprises in other words)
>- strict governance of information and enforcement of consent
>- data ownership by the patient
>
>- thomas beale

One attractive option that goes some way to satisfy the above ideals 
is to have any particular data exist in only one primary location 
(backed up, of course), and therefore the total record "scattered" 
potentially around the world.  The patient-held e-card (also backed 
up somewhere?) carries the _index_ to these locations/data, as well 
as being the physical part of a "key" that allows access to this 
data, and maybe also carrying some portion of the data (at least a 
summary of key events and critical information such as serious 
allergies, medication etc)

tony grivell


>
>
>-
>If you have any questions about using this list,
>please send a message to d.lloyd at openehr.org

-- 
 
...ooOoo...
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The concept of contribution

[Gerard Freriks]

Hi,



After analysis done by the Smartcard people in the Netherlands they came to
the conclusion that Smartcards with significant medical information on it
need special safety procedures and back-up facilities.
These extra's necessitate a full back-up centrally and create
synchronisation problems. Everything is technically feasable.
But was to expensive.
They concluded: the smartcard must be used in the process of identification,
only. And even that was very expensive.

With regards,

Gerard





On 2002-06-12 04:18, "Tony Grivell"  wrote:

> At 11:34 +1000 12/6/02, Thomas Beale wrote:
>> Li, Henry wrote:
>> 
>>> This is the process
>>> A patient visits a care provider and presents his e-card as a proof of
>>> consent to treatment
>>> 
>>> The health care provider loads up the health record into the browser and
>>> download the info into whatever system he is using (this applies to Hospital
>>> as well), the health care provider can also choose to discuss the patient
>>> with other health profession on line through the web.
>>> 
>>> When the patient leave the care provider, it is the responsibility of the
>>> care provider to upload whatever he has done to the patient back to the
>>> e-card and the patient goes away. Any subsequent test results etc, it is the
>>> responsibility of the health care provider to contact the patient to have
>>> the data put into the patient's e-card. (the patient can choose not to do so
>>> - but it is of course to the patients benefit to do so)
>>> 
>> So now there are copies of the EHR a) on the patient's card, and b)
>> on the system. Over time there will be many copies of the EHR, some
>> more up to date than the copy on the patient's card. What's the
>> point of having a copy of the EHR on the patient's card?
>> 
>>> The benefit of this is at any one time, the patient is the only person that
>>> has a complete health history of himself and he owns it. (Solve the
>>> 
>> This won't be true - over time I doubt that anyone will have a
>> complete history of the patient - they will all have partial
>> histories, which admittedly is the curret situation, but I don't see
>> any utility in having yet another copy of part of the EHR on the
>> card.
>> 
>> Re: the fear of big brother - I agree this is real; but the
>> solutions in my opinion lie in:
>> 
>> - distributed computing systems
>> - data management by clinical and/or public bodies (non profit
>> enterprises in other words)
>> - strict governance of information and enforcement of consent
>> - data ownership by the patient
>> 
>> - thomas beale
> 
> One attractive option that goes some way to satisfy the above ideals
> is to have any particular data exist in only one primary location
> (backed up, of course), and therefore the total record "scattered"
> potentially around the world.  The patient-held e-card (also backed
> up somewhere?) carries the _index_ to these locations/data, as well
> as being the physical part of a "key" that allows access to this
> data, and maybe also carrying some portion of the data (at least a
> summary of key events and critical information such as serious
> allergies, medication etc)
> 
> tony grivell
> 
> 
>> 
>> 
>> -
>> If you have any questions about using this list,
>> please send a message to d.lloyd at openehr.org

--   --
Gerard Freriks, arts
Huigsloterdijk 378
2158 LR Buitenkaag
The Netherlands

+31 252 544896
+31 654 792800


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The concept of contribution

[Gerard Freriks]

On 2002-06-12 03:34, "Thomas Beale"  wrote:

> 
> 
> Li, Henry wrote:
> 
>> This is the process
>> A patient visits a care provider and presents his e-card as a proof of
>> consent to treatment
>> 
>> The health care provider loads up the health record into the browser and
>> download the info into whatever system he is using (this applies to Hospital
>> as well), the health care provider can also choose to discuss the patient
>> with other health profession on line through the web.
>> 
>> When the patient leave the care provider, it is the responsibility of the
>> care provider to upload whatever he has done to the patient back to the
>> e-card and the patient goes away. Any subsequent test results etc, it is the
>> responsibility of the health care provider to contact the patient to have
>> the data put into the patient's e-card. (the patient can choose not to do so
>> - but it is of course to the patients benefit to do so)
>> 
> So now there are copies of the EHR a) on the patient's card, and b) on
> the system. Over time there will be many copies of the EHR, some more up
> to date than the copy on the patient's card. What's the point of having
> a copy of the EHR on the patient's card?
> >>

This is the position of the Dutch Smartcard Group.


>> The benefit of this is at any one time, the patient is the only person that
>> has a complete health history of himself and he owns it. (Solve the
>> 
> This won't be true - over time I doubt that anyone will have a complete
> history of the patient - they will all have partial histories, which
> admittedly is the curret situation, but I don't see any utility in
> having yet another copy of part of the EHR on the card.
> 
> Re: the fear of big brother - I agree this is real; but the solutions in
> my opinion lie in:
> 
> - distributed computing systems
> - data management by clinical and/or public bodies (non profit
> enterprises in other words)
> - strict governance of information and enforcement of consent
> - data ownership by the patient
>>>

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.




 
> - thomas beale
> 
> 
> 
> -
> If you have any questions about using this list,
> please send a message to d.lloyd at openehr.org

--   --
Gerard Freriks, arts
Huigsloterdijk 378
2158 LR Buitenkaag
The Netherlands

+31 252 544896
+31 654 792800


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The concept of contribution - first post :-)

[David Guest]

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.
>  
>


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Re Ownership

[Gunnar Klein]

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 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:
>
> >Agr

Re Ownership

[Gerard Freriks]

Gunnar,

As a summary of my e-mail:
- Ownership is irrelevant,
- Authorship is relevant,
- Authors that commit information to a record can NEVER remove the
information; they can add;
- Patients can NEVER remove the information; They can add/annotate; Access
control list can be changed by them, only,
- There are different types/classes of data/information,
- Each with possibly different acces control lists and rights,
- Patients need a proxy to exercise all their rights; Proxies can have
mandates,
- My position isn't according to Dutch law. It is a personal one.

Gerard



On 2002-06-12 10:58, "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 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, emp

Subject header for this list

[Thomas Beale]

I already asked David Lloyd to do what you ask for, and I think in the 
balance it is more useful visually than the slight cost of redundant 
wordssorry Tim!




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FW: The concept of contribution

[Thomas Beale]

Tony Grivell wrote:

> One attractive option that goes some way to satisfy the above ideals 
> is to have any particular data exist in only one primary location 
> (backed up, of course), and therefore the total record "scattered" 
> potentially around the world.  The patient-held e-card (also backed up 
> somewhere?) carries the _index_ to these locations/data, as well as 
> being the physical part of a "key" that allows access to this data, 
> and maybe also carrying some portion of the data (at least a summary 
> of key events and critical information such as serious allergies, 
> medication etc) 

whether it could even carry a reliable index of these locations is 
doubtful in my mind - people are too forgetful, they won't usually make 
the effort. But the critical information should of course be there. Most 
critical info is fairly non-volatile and does not need to be updated 
that often (current medications the probable exception).

- thomas




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