UK - Doctor's access to family info

Question

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 My own personal knowledge is certainly out-of-date, incomplete and unreliable at best!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?

Answer 1

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.