A rock and a hard place? Ministry of Defence | Defence News | MOD confirms loss of recruitment data

[James Cox]

On 29 Jan 2008, at 15:36, Ian Batten wrote:

>
> James Cox wrote:
>
>>
>> The medical code of confidentiality is extremely simple.
>
> And later
>
>> Yes, it's complex and grey
>
> Quite.

Heh. Yes, the contradiction isn't great. I'm pretty sure the code is  
fairly simple from the last time i checked- it's the implementation  
which gets hazy. :)
>
> ``When it comes to wider clinical audit - practice management,  
> hospital administration - even epidemiology... alot of this works  
> well with anonymized data.''
>
> But you said that doctors shouldn't release patient data, period.   
> Now you're making an exception, I think, for anonymized data.  Some  
> clinical audit and epidemiology doesn't work with anonymized data,  
> and as Ross has pointed out age+postcode+sex+one_detail is pretty  
> much a unique identifier.  What to do then?  If the answer is that  
> you want to shut down some research because of privacy concerns,  
> fine, that's an honest argument (and one I have some sympathy with):  
> but it's not simple, and a lot of different stakeholders have  
> genuine and legitimate views on both sides.

I think there are certain occasions where blanket consent is given -  
but again, there's a marked difference between what i might say to a  
doctor, and what a doctor might have to expose: I may tell a doctor i  
got hiv by having unprotected sex whilst high on meth, he may only  
disclose i have HIV to a clinical partner - the rest of it is  
irrelevant to the outcome.

>> The point was, if you have a procedure (especially an elective  
>> one), the hospital you go to isn't really permitted to inform a  
>> next of kin, unless you consent or are somehow incapable of making  
>> your own consent (e.g. being unconscious)
>
> It's a hell of a lot more complex than that, as you well know.  The  
> circumstances under which minors can seek treatment without  
> reference to their parent/guardian are ill-defined and quite  
> properly left up to doctors' discretion.  Symmetric with that, the  
> circumstances under which parent/guardians can seek treatment for  
> minors without the minor's explicit consent are likewise vague.   
> Some doctors would probably inform next-of-kin if a confused,  
> borderline-Alzheimers' patient presented, and I think it's  
> impossible to make hard and fast statements about that, too. Next-of- 
> kin have limited and again vague powers of consent over  
> incapacitated patients (something the new enduring power of attorney  
> replacement whose name momentarily escapes me is designed to resolve).

Again in this instance the BMA and GMC have set guidelines about what  
to do here (e.g. morning after and other birth control methods).  
Parents typically get carte blanche to decide what treatments their  
kid has - i don't believe all children are just dying to spend several  
years in braces, for example. The haziness comes when the child is of  
the age and maturity to begin to have a voice in their treatment -  
this being from about the age 16, typically. At this point, should the  
doctor follow the wishes of the child (someone not legally old enough  
to sign most of the contracts / disclaimers a hospital might produce)  
or stick with a parent?

These are settled on a case-by-case basis, but there is wisdom for the  
direction a doctor should take.

> Privacy wonks, like me and I suspect you, will argue in public that  
> confidentiality trumps all other concerns.  That's not the position  
> of the general public, and it's not in the end a position we would  
> defend absolutely anyway.
>
> I've told before of the row I had with the NHS about their urge to  
> talk to my wife about my request for a vasectomy.  By contrast, my  
> great uncle, who has few relatives, is showing the effects of  
> several small strokes, is very confused, and is unable to make  
> decisions about his own care.  Left to his own devices he would  
> starve in his house (and has already made a fairly good attempt at  
> doing so).  Does the confidentiality between him and his doctor  
> trump, you know, caring for him?

I'm a little disturbed that the NHS would be insistent to talk to your  
wife about the procedure you had (though i think i am more perturbed  
you wouldn't wish to share it yourself!) Still, the great uncle is  
simpler: when someone is deemed unable to care for themself, it  
becomes much simpler to get them help....

But yes- there are areas of unsuitable grey here. But by ensuring  
everyone follows an applicable code of ethics, the data should be  
protectable. Interestingly, this all has presented significant  
challenges to the patient care record system implementors- i don't  
believe they found a reasonable solution for managing such access in a  
safe way.

best,
james