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Situation: My NHS doctor asks me "Do you have any history of X in the family?"

(X can be anything you like: cancer, insanity, arthritis, sarcasm etc, doesn't matter, I'm more interested in the availability of information).

I was baffled by this question. Surely my medical records tell him who my parents/grandparents are, and therefore what my medical history is. Why is he asking me directly if he has the database at his fingertips? It's not like he's just making conversation.

My parent's sure don't tell me what ails them and I'm sure their parents didn't encumber them likewise. My own personal knowledge is certainly out-of-date, incomplete and unreliable at best!

If anyone knows the answer to his question, then it's his computer screen, right?

Is he just too damn lazy to look it up? Or doesn't he have access to my family information? Either way seems very worrying.

I've been attending this practice for my whole life, I've never transferred and have never requested new doctors, they have always been good, but now I'm really concerned that there is a disconnect that might leave me vulnerable to uninformed diagnosis.

Why doesn't he know my medical background?

  • I think that Kate covered the most relevant issue - privacy in the answer below, but I can't help but wonder: even if the doctor is asking you to save time, why do you automatically assume that they are being lazy? The doctor's time costs a lot of money and regardless of the healthcare system financing method it is ultimately your money. (E.g. if you have a state budged financed health system you are paying for it each time you pay taxes - if you want the amount of time the doctor has to spend on you to increase, the taxes have to increase as well.) – Lucky Dec 15 '16 at 1:28
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    As Kate explained there is nothing simple about looking it up in a database. My point wasn't to try and answer the question, but rather say that healthcare professionals are not malicious slaking devils who are out to get you; they are genuinely trying to help. If they can't the first thing that comes to mind is not that they won't, but rather that there is a reasonable explanation why they can't. If you work with your doctor instead of against them you will be better off in the long run. Your health is your and the doctor's common goal. – Lucky Dec 16 '16 at 23:42
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+100

Let's assume or pretend for a moment that a system such as the one you suggest exists. I see two immediate problems, both related to medical privacy:

  • your doctor is not necessarily your mother or grandfather's doctor. Why should a doctor be able to look at the medical records of someone they're not treating? Have your family members all consented to let any and all future doctors read through their records? Have you?
  • as you mention, you may not know all the illnesses in your family. Imagine if one day your doctor said to you, "because your mother has X, I think we should check you for it also" and this is how you learned some shocking news about your mother. If the only information your doctor has comes from you, there's no chance of telling you something you don't already know. If the doctor were to try being vague and just suggest checking you for X, that won't always work - many people would think "why test for that so young? Someone in my family must have it. I wonder who?" and start the detective process.

Then there's adoption. If you were adopted and don't know who your birth parents were, is it ok with you if your doctor knows? And gives you nuggets of information about illnesses they've acquired since you were born? If not, then this too will be a giant blank spot since whether or not your adoptive parents (your real parents) have heart trouble isn't interesting from a medical point of view.

Then there's the matter of UK residents whose parents or grandparents are not UK residents and therefore have no records with the NHS. Even if a system existed and the legal and privacy issues could be overcome, your doctor isn't going to get access to any family members who live elsewhere. I live in Canada and have relatives in England, so I know this is a real thing.

A system that correlated and cross referenced everyone into families, using birth, marriage, and adoption records, so that a doctor could just click "see family history" would be expensive to build and a privacy nightmare if it was hacked. And at the end of it all, it would have blank spots and missing information. It would leave the doctor at risk of telling you things you weren't supposed to know. So all that money would create a flawed and possible even harmful system.

Better by far to ask you. You might not know, it's true. But then again, you might. I know what my grandparents died of and the one parent I have lost. Diseases mild enough to be kept from an adult child are also mild enough not to be interesting medically. The "ask the patient" technique may not be perfect, but it's cheap, portable, privacy-respecting, and overall - good enough.

  • Why can't the data be anonymised? – user7610 Dec 14 '16 at 22:10
  • Well, I suppose it could be, but that's more work again. I need to know some identifying number to point me to your mother's record, and now the record part and the name part have to be separated, and somehow that number never put anywhere together with her name ... it's not as simple as it seems at first glance. Software never is. – Kate Gregory Dec 14 '16 at 22:16
  • As a career software engineer, I'm not convinced about that but I'll give you the benefit :) I know what you mean. I think the friction here is simply bureaucracy and not technical issues. – user7610 Dec 16 '16 at 20:27

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