UK Keratoconus Self-Help and Support Association

There is a little "off topic" discussion stirring in another string, elsewhere in the KC site. I was wondering, how many would favour patients being able to hold their own notes.

The pros include 1 the possible disinclination of healthcare professionals to write anything rude in your notes.
2 the fact that any time you needed to see an unfamiliar doctor or visit an unfamiliar clinic you could show them your notes and they would be instantly up to speed.

The cons include the reluctance of many people in the healthcare system to let you see what they have written about you.

So here's the question: do you favour patients being able to hold their own notes?

This poll will run until May 2. Oh, by the way, I have enabled re-voting, so if you are persuaded by any arguments in the string, you can change your vote!

And you can blame me for stirring it elsewhere........
The downside I can see of HOLDING your own notes is that, if you want the RIGHT to hold them, then you are also accepting the RESPONSIBILITY of not losing them, of remembering to bring them with you whenever you go to see part of the medical profession, and having them with you, or at least handy, at all times, in case you have a medical emergency. FOr example, you'd need to take those notes on holiday with you in case you had to see a doctor in a hurry on holiday.
And of course you wouldn't be packing them in your hold baggage anywhere near Heathrow, would you?!?!
In a new/future era of computerised records, with all the stuff held on some memory stic or the like, this is physically easier than lugging around buff folders of lots of illegible paperwork. But you'd still need not to lose it.
ANd the more compact and easily-portable, the less likely it is that anyone and everyone could actually read and make sense of the thing they are obliged to carry about, not everyone being of the same equipment spec of sill level with Modern Technology.
OTOH, I'd certainly support a patient's right to have A copy of all their notes, even if their usual hospital wanted to have the "top" copy in their Records Dept just in case you lost it.
And certainly to see and read and understand what it contained.
Which we do.....
AIUI, we all have the legal right - under the Medical Records Act 1990 IIRR, now coming under part of the Data Protection Act 1998, to request to see our medical records.
Again as I understand it, any patient can request:
A: to make an appointment to see their records, in company with a suitable medic who can explain them; or
B: to copies of all or part of those records, for which they can be asked to pay reasonable costs for making the copies, up to a certain limit.
A medic has to approve release of the information, and can withhold any info they think it will not be in the patient's interests to see. But, again AIUI, you'll be told if anything has been withheld, and can then go back and request access to what has been held by invoking the Freedon of Information Act.
Bureaucracy gone mad, or what??????????
I gather there is a suggestion that this legal right has done something to inhibit certain parts of The Medical Establishment (!) from writing rude comments on their patients in the notes. I don't think there is any evidence to sugest that the notes are any more conprehensible, in the sense of being less full of jargon/medic's abbreviations, nor any less illegible.
I can only suggest that people who believe in being the one person most responsible for their own health might think of doing this and keeping the copies sensibly and accessibly, and having them to take to other medical practitioners as appropriate. But do think carefully too, because you ight read more than you were expecting to see.
Rosemary

Yes, I want the right and the responsibility to hold my own notes.

I do not think that I am any more likely to misplace my notes than the hospital records departments where medical notes are held on me. I do not think I need to have the only or even the master copy, but I do think that a chip on a memory stick, or a credit card would enable doctors whom I do not routinely see or even clinics that I do not routinely attend to see my history, and not depend on the bits of it that I can remember or that I think relevant.

There is no reason that the information on my chip should not be updated every time I attend the doctor or a clinic. I ought to have the ability to read the information on my records and should not have to jump through the hoops currently required to catch a glimpse of what is written about me.

Andrew

I don't think I am particularly likely to mislay my notes - and I too have had the hospital mislay them!
(actually, there are 2 Rosemary Johnsons going to that hospital - I'm Miss and she's Mrs. I don't think any of her notes are in my folder, but maybe the bits someone once couldn't find of mine got put into hers at one point.........)
(they think they've got problems - my dentist has 3 of us........ Now, if I were called John SMith, this might be a common problem.......)
Thinking about this some more.......
Maybe it isn't the full set of notes that is so vital. After all, who cares what my visual acuity was with a left PMMA lens in 1988, or that I had a bout of flu and wanted a sick note for work in 1992. Or the like.
Obviously, the recent bits, and the key bits like grafts, intacs insertion, are important.
Maybe the key thing to have with us - or accessible wherever we go, which may or may not be the same thing - is the salient and critical details, not the complete caboodle?
- the set of information, for example, that people may have on the "Medicalert" system, or similar, whether a commercial scheme or whatever, in case of emergencies.
The critical things a strange medic seeing you would need to know, without all the wood hiding the trees.
And yes, I do agree that for this set to be complete and useful, one's medical professional advisors ought to be supportive of the idea dn supply the techie details, as well as us each taking responsibility for making sure it is complete, coordinated and up to date. And above all useful. And contain all the vital warnings and "what to do if...."s.
Of course, the bits that go in the full set of notes need to be accurate, reasonable and not libellous.
They also need to be correct and complete - and not ahem! edited in whatever way might deflet legal action and/or irate FOIA-weilding patients.....
Rosemary