Re: [Gnumed-devel] Family History tables

[Jim Busser]

On 2011-06-09, at 12:02 AM, Jim Busser wrote:

> Suppose instead that Maria was *already* in the praxis, existing as a person 
> with a history that includes diabetes and other disorders, maybe thyroid and 
> diabetes and she had an abortion at 38 because she had an affair. In this 
> scenario, when I tell you about my mother, you ask me my mother's name, in 
> case she exists already in GNUmed, and you find her. Therefore you somehow 
> link her to me as a family member, perhaps
> 
>       mother of son
> 
> and I am
> 
>       son of mother
> 
> But do we really want me, the son, to be able to know things about my mother 
> that she never approved anything to be told to me?

Let us turn this situation around. I think I just came to the understanding 
that any sharing within GNUmed must be "push" not "pull". Let me explain.

Suppose when I reached age 12 that I developed vitiligo, and at 24 I developed 
psoriasis, and also manifest the beginning of male pattern baldness.

Suppose that I am also now a parent, with an older son who is now age 13 who 
enters this GNUmed praxis as a patient. At my son's first visit, he tells the 
praxis doctor that his father is also a patient in the praxis. We have a good 
relationship and therefore we are happy for each of us to be added to the 
other's social network, but this will not always be true for every pairing. 
Just because I ask that my son is added to my own social network should still 
allow him later, if he has fights with me, to de-list me from his own social 
network. Therefor I think social network needs to be separate from family link… 
two different links despite that they are connecting the same pair of people. 

I think it is worthwhile to create the family history link even though we did 
not yet add (share) any health information because
- even though there is not yet any approval to share information
--> the existence of the link can be a prompt.

At different times, it may be helpful for my doctor to look in my family 
history and say

Ah! I see that 9 months ago a new person was created in GNUmed and this person 
(13 year old son) told his praxis doctor that in this same praxis you are his 
father, and so this link was created. Is there anything in your medical history 
that you are willing to share to your son?

And I would say "sure!". Copy to him my vitiligo and psoriasis and my male 
pattern baldness if you think it is useful. However my appendix removal at 17 
is likely irrelevant. Also I do not want my (fictional) alcoholism copied to 
his record.

Later I develop colorectal cancer and when entering this diagnosis my own 
doctor says "mmm... probably we want to make sure this is added to your son's 
family history" but I say "look, you only just gave me the diagnosis today. I 
need time to tell my wife and makes plans. Maybe in a few months it can be 
added to his record. But it gets busy in the praxis, and we never "push" the 
information and my son grows to age 17 and never had his own encounter in the 
praxis in the 4 years until I died, for another 6 years until at age 23 he 
returns for tetanus vaccine and mentions to the doctor he is getting married 
and the doctor says that's great, you must be excited and my son says "yes, I 
do wish my dad were still alive and able to come, he died 6 years ago from 
colorectal cancer" and the doctor can activate my record in GNUmed and because 
I am dead he can copy over anything he likes.

One other scenario. Before I developed colorectal cancer, my brother told me he 
developed Huntingdon's disease. We did put this in my own family history 
however we did not copy it to my son because at the time it was new and 
difficult information. Even when I am dead and my health history is permitted 
to be pushed to my son, we are talking about my actual personal history and not 
the family history that I report. Therefore we do not push "my" family history 
to my sons. My sons (if they knew about the other family history) could tell 
their doctor who would enter it into their family history.

Therefore is seems like what appears in the family history for any person 
(patient) in GNUmed should be a combination of
- a copy of information that was "pushed" from the person-relative GNUmed 
record on the basis of the consent of the relative, and
- rows which are created based on *self-report* of the patient should not link 
to the source person -- even if the person existed in GNUmed

-- Jim