Subject of care

Technical (archive)
1

Dear all

I have been reviewing the subject of care - over family history. It is clear
that the following information is potentially useful:

1. The name of the person so you can refer to them as so-and-so

2. The relationship (father, mother) this might or might not include their
genetic relationship (adoptive) - at present I have this in the genetic
relationship boolean value of the family history problem. I think this is
the most appropriate as it is the only time when it is essential to know
it??

3. The ID of the person in the demographic server - allowing contact details
etc.

Can others think of other issues with identifying the subject of an entry in
the EHR - (not the ehr itself!) Times when this is likely are around the
birth of a child and for family history problems.

Cheers, Sam

2

Sam,

I'm not sure if you are only considering familial links. If not,
then organ donor/donee relationships might give rise to similar
(and other) identification requirements.

eric

3

Eric,

in some countries it is illegal for the donee to know the donor
name so it may not always be convenient/legal to store it.

Just my 2 cents,
Karsten

4

Eric

We have fetus and donor as subjects of care also - sorry for omitting that.
Cheers, Sam

5

Dear all,

I am joigning the discussion, some of you already know me from GEHR times,
so a big hug to them and friendly greetings to all of you.

Re: subject of care, several remarks from my perspective but which may
already have been treated as I am not already through all of the
documentation.

1) I agree with the Donor problematic raised by Eric and Karsten. The
identification of the donor is not everywhere available, but some
characteristics of the donor may well be disclosed perhaps. The same issue
applies also for transfusional medecine of course.
2) 'Presumed' fatherhood is suspicious, when not clearly tested :wink:
3) Subject of care during pregnancy and foetal treatment
4) Adoptions are often not diclosed to the childrens until adolescent or
even adult age.
5) Lab test results samples which are treated anonymous, i.e. HIV and other
sexually transmitted diseases, Drug use etc...

Till then

Mario

6

Hi Sam,

Is sometimes (from a specialist view) a specific System (liver or heart) not
treated as a subject of care ? Example SIZE related to
the organ (or other subsystem of the body) rather than applied on the whole
individual ?

Cheers, Mario

7

Sam Heard wrote:

Dear all

I have been reviewing the subject of care - over family history. It is clear
that the following information is potentially useful:

1. The name of the person so you can refer to them as so-and-so

but not in the EHR as such - in some places like Norway, it is not allowed to have patient name or some other kinds of identifying information in the EHR. So it has to be in the demographic server, ad referenced from the EHR by meaningless ids. On the screen this will of corse be invisible.

- thomas beale

8

Mario

This may be the case but our subject of care is quite specific - it is the
whole person to whom this information relates.

So information about the fetus or donor can be in the person's record. We
have family history problem - with a specific subject - that is, the
relative. I have modelled relatives to allow each to be adoptive with zero
genetic sharing if required.

It is true that paternity and adoption are not always disclosed - but we
have to go with the patient's belief and test where important.

Cheers, Sam

9

Hi,

S.o.C can mean many things:

One person
One mother or foetus
Any body part in or outside the body

And any grouping of items mentioned above.

A S.o.C indicates the participation in activities.

Gerard

Dear all

I have been reviewing the subject of care - over family history. It is clear
that the following information is potentially useful:

1. The name of the person so you can refer to them as so-and-so

2. The relationship (father, mother) this might or might not include their
genetic relationship (adoptive) - at present I have this in the genetic
relationship boolean value of the family history problem. I think this is
the most appropriate as it is the only time when it is essential to know
it??

3. The ID of the person in the demographic server - allowing contact details
etc.

Can others think of other issues with identifying the subject of an entry in
the EHR - (not the ehr itself!) Times when this is likely are around the
birth of a child and for family history problems.

Cheers, Sam
____________________________________________
Dr Sam Heard
Ocean Informatics, openEHR
Co-Chair, EHR-SIG, HL7
Chair EHR IT-14-2, Standards Australia
Hon. Senior Research Fellow, UCL, London

105 Rapid Creek Rd
Rapid Creek NT 0810

Ph: +61 417 838 808

sam.heard@bigpond.com

www.openEHR.org
www.HL7.org
__________________________________________

____________________________________________
Dr Sam Heard
Ocean Informatics, openEHR
Co-Chair, EHR-SIG, HL7
Chair EHR IT-14-2, Standards Australia
Hon. Senior Research Fellow, UCL, London

105 Rapid Creek Rd
Rapid Creek NT 0810

Ph: +61 417 838 808

sam.heard@bigpond.com

www.openEHR.org
www.HL7.org
__________________________________________

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10

Sam Heard wrote:

Mario

This may be the case but our subject of care is quite specific - it is the
whole person to whom this information relates.

yes - in the openEHR models, there is another 'subject', namely ENTRY.subject, which is the 'subject of the clinical statement' represented by the ENTRY - which can be a foetus, organ, stool sample or whatever.

- thomas beale

11

Gerard Freriks wrote:

Hi,

S.o.C can mean many things:

One person
One mother or foetus
Any body part in or outside the body

And any grouping of items mentioned above.

A S.o.C indicates the participation in activities.

in the openEHR models, we have explicitly made "subject of care" the party being cared for; this is distinct from the "subject of a clinical statement", whcih may be an organ or sample of some kind. All clinical statements are expressed by ENTRYs of one kind or another, and all must appear inside TRANSACTIONs (CEN COMPOSITION). There is also an attribute ENTRY.subject_relationship, which means the relationship of the subject of the statement to the subject of the record.

- thomas beale

12

Thomas Beale wrote:

Gerard Freriks wrote:

Hi,

S.o.C can mean many things:

One person
One mother or foetus
Any body part in or outside the body

And any grouping of items mentioned above.

A S.o.C indicates the participation in activities.

in the openEHR models, we have explicitly made "subject of care" the party being cared for; this is distinct from the "subject of a clinical statement", whcih may be an organ or sample of some kind. All clinical statements are expressed by ENTRYs of one kind or another, and all must appear inside TRANSACTIONs (CEN COMPOSITION). There is also an attribute ENTRY.subject_relationship, which means the relationship of the subject of the statement to the subject of the record.

David Lloyd pointed out that I made a mistake here (never answer emails during jetlag after 28 hrs flying!) - the ENTRY.subject is a human being (includig foetus); inside the entry is where you say what part of that human being you are talking about. So Where the subject of an ENTRY is indeed the subject of the record, you might record an observation about their kidney. But the subject could also be another person (ENTRY.subject_relationship = "donor"), and the observations could be about their kidney (in which case they will be the kind of observations that one would make about a donor organ).

Sorry for the confusion

- thomas beale

13

Tom

The names of child or grandmother should not be via demographic as this
would also have privacy issues.

Next of kin - has legal status and should be via demographics.

Sam