Sam, I take Tom's position. The issue is whether there is a one to one mapping between subject of care and an EHR.
>From a health perspective, a foetus can be considered as a subject of care in its own right. A foetus is tightly coupled to a mother, but is sufficiently distinct for there to be a need for a separate EHR under certain circumstances. The question is when do we spawn a new record? Under normal circumstances, this would probably occur at birth, partly since the foetus becomes a person under law, partly because it becomes an entity predominantly independent of the mother, partly because prior to birth there is rarely a need for information specifically regarding the foetus. However, when the foetus does become a subject of care, i.e. measurements and interventions are undertaken specifically for the benefit of the foetus, there are good grounds for spawning a separate EHR. Either approach requires a more complex EHR model. But surely the raison d'etre of an EHR is to promote the care of a subject? Or is it being proposed for some other reason of which I am unaware? eric -------------------------------------------------------------------- On Thu, 19 Dec 2002, Sam Heard wrote: > Tom > > This is not necessary or appropriate - as Matthew has said - placenta is > both! It is important that our solution allows information about another > person to be in an EHR - family history is a good example. We will not link > between peoples EHRs - ever in my opinion. > > Cheers, Sam > > > -----Original Message----- > > From: Thomas Beale [mailto:thomas at deepthought.com.au] > > Sent: Thursday, 19 December 2002 1:43 AM > > To: Sam Heard > > Cc: openehr-technical at openehr.org > > Subject: Re: [Fwd: RE: Subject of care] > > > > > > > > I think that the only systematic approach is to make a new EHR for each > > genetically distinct individual. This means making an EHR for a foetus > > as soon as anything at all is to be measured about it, and also storing > > the link of this EHR to that of the mother. If the foetus dies in utero > > or is aborted, then its EHR shows this properly as "death" jsut as it > > would be shown in a normal person's record. As for situations where the > > individual's DNA distinctness is not totally clear like the bone marro > > transplant situation, I don't think that is a problem. Observations can > > be made on genetically different material to the patient, in the > > patient's record, as long as these observations relate to the care of > > that patient. E.g. blood tests, other tests made to a sibling for the > > sole purpose of doing a transplant into the patient - should probably go > > into the patient's EHR... > > > > But I do think we need to forget the idea that because a foetus is not > > really a person, it is not a possible subject of an EHR. I think we have > > to work on genetic distinction and distinct organism (whether called > > "human" or not) instead. > > > > thoughts? > > > > - thomas > > > > Sam Heard wrote: > > > > >Matthew > > > > > >Great scenario's > > > > > >>1. If prenatal diagnosis is being done by chorionic villus sampling > > >>(CVS) in a twin pregnancy (which does happen) then it is the placenta > > >>- or rather the placentas - which are sampled. Each placenta has a > > >>DNA genotype matching that of the fetus attached to it (ie not the > > >>mother) as the placenta is an extension of the fetus. If however the > > >>fetus is an extension of the mother, then are we really saying we > > >>like the idea that the placentas may have to appear as multiple > > >>"temporary" organs of the mother, which are different in every > > >>pregnancy, and which never share her total genotype? A likely outcome > > >>would be selective termination of one twin (the affected one, on the > > >>basis of a molecular finding and either a makable or a confidently > > >>predictable clinical diagnosis) leaving the unaffected one to go to > > >>term. Thus a part of the mother is diagnosed clinically and > > >>molecularly, findings which are important for the mother later on, in > > >>that they'll trigger appropriate care next time around, but which > > >>*must not* be confused with her own clinical diagnoses or test > > >>results. > > >> > > > > > >This example is a very good one - it shows that there is a need to > > identify > > >the fetus over and above its relationship with the mother. I have > > suggested > > >that we use a local label for this - could be LOCAL:Twin1_2002. - the > > >relationship for the information is FETUS. The important thing here is > > that > > >we have the idea of subject of care - a unique identifier (or self) > > and the > > >relationship. > > > > > >The sampling is the taking of a histological sample of a body part - the > > >subject is the FETUS. There will be a procedure record, a sample and a > > >histological report - all with the fetus as the subject of care for the > > >data - in a composition that is part of the mothers EHR. It may be > > copied to > > >the child's EHR in the future - I have thought about the transform > > required > > >to do this and it should be relatively easy if the relationship > > of the two > > >records is stated first. > > > > > >>2. Bone marrow transplantation, where it may be necessary to > > >>distinguish that the post-transplant patient may still have a > > >>haemoglobin variant, but a different one to the one they were treated > > >>for, and accordingly no disorder to go with it, but will still be > > >>genetically as they were before the treatment in every other organ. > > >>Also the donor was most probably selected from the same family, so > > >>confidentiality may be slightly different...? > > >> > > > > > >Interesting - who is the subject of care then? I guess this will be > > deduced > > >from the data - I do not think that we can say the origins of all the > > states > > >in a person that arise following a donation - at times it may > > be ambiguous > > >(graft v host). > > > > > >We have considered 'donor' to be the relationship - but the person may > > have > > >a relationship with the person apart from this? I do not think that the > > >subject of care needs to be the donor then - it can be the family > > member as > > >it is known who they are. Interesting! > > > > > >>It seems to me that we can either organise our concepts to make this > > >>kind of record easier and more obvious, or we can begin to inbuild > > >>problems for later on (eg if the fetus is part of the mother, having > > >>to explain to all our knowledge agents that this might not extend to > > >>genotypes, or if it does, then by chance rather than biological > > >>imperative etc...). In the event of one of two fetuses being > > >>affected, and one pregnancy being terminated, what is the result in > > >>the record to indicate the original number of conceptions, the fact > > >>that a genetic risk actually produced a fetus with a prospective > > >>problem, and the DNA and other data originated in the process of the > > >>testing of the CVS sample? It would be wrong, I feel, to treat the > > >>fetus' diagnosis as one of the mother, as confusion here could lead > > >>to all kinds of erroneous conclusions (one fetus had sickle cell -> > > >>mother - who is actually just a carrier - has sickle cell...?). > > >> > > > > > >I do believe that we have this covered - the donor example is a bit of a > > >mind bender but I think the subject of care and relationship > > provides the > > >solution. > > > > > >COmments? > > > > > >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 at bigpond.com > > > > > >www.openEHR.org > > >www.HL7.org > > >__________________________________________ > > > > > >- > > >If you have any questions about using this list, > > >please send a message to d.lloyd at openehr.org > > > > > > > > > > -- > > .............................................................. > > Deep Thought Informatics Pty Ltd > > mailto:thomas at deepthought.com.au > > > > openEHR - http://www.openEHR.org > > Archetypes - http://www.deepthought.com.au/it/archetypes.html > > Community Informatics - > > http://www.deepthought.com.au/ci/rii/Output/mainTOC.html > > .............................................................. > > > > > > > > > > > > - > 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
