Meaning of "Care Information Exchange"?

[kristina]

Hello,
I have just been informed by a hospital, where I have not been treated as a patient, that supposedly I have given my consent that all my medical records have been sent to them under a "Care Information Exchange". I have never given my consent to anything like that, because I feel rather private about my medical issues and I am particularly shocked, because I have always hoped and been under the impression, that a certain understanding and medical etiquette exists between patients and their medical doctors protecting not only the privacy of patients at all times, but also their dignity ...
Am I overreacting - because I feel quite shocked and stunned and very disappointed about such a terrible action behind my back, about which I have not even been asked -  or is it quite normal for patient's names and medical details to be exchanged wherever without any bother about the patient's feeling about it?
Many thanks from Kristina.

[Simon Dog]

Your information is never private from the insurance companies that pay the bills, and they share that with the MIB (Medical Information Bureau) to help life insurance companies avoid underwriting bad risks.  Supposedly only disability, life insurance long term care insurance and not regular health insurers feed data to the MIB files.

[MooseMom]

kristina, I am just guessing that since you were unhappy with the care you'd been receiving, you have agreed to see a different physician for your after tx care and/or for the treatment/surgery for your incisional hernia.  If that is truly what is happening, and if I have not misunderstood what you've said in the past, then I am assuming that your "old" medical team is sending your notes to your "new" medical team.  Do you think this is what is going on?

[UkrainianTracksuit]

Hi kristina,

Glad to see you though not under these circumstances.

When I first read "Care Information Exchange" I automatically thought it was a sort of integrated system between a certain hospital network where your medical files are shared with the relevant doctors. It is kinda of like a big digital pool of information that can be accessed by your doctors so everyone on your care team knows what is happening with you so that they can make better decisions and you do not need to "rehash" your story every time you see a doctor. That's what we have in our "health network" and my transplant center (deal with 2 unaffiliated hospitals). Since you are in the UK with the NHS and we are socialized over here too, that's what I originally thought.

You have probably already seen this, but here is some basic information about the program: https://www.careinformationexchange-nwl.nhs.uk/your-information

There are other sites for specific CIE but London was the first that came up so I used that!

I admit, it is unnerving to read that your GP can put this information in the system. There is the opportunity to opt out as you see on the above page. Hopefully that option is acknowledged. Still, it must have sure unnerved you to receive that call.

[kristina]

Many thanks for your kind replies, Simon Dog, MooseMom and Ukrainian Tracksuit, it is very much appreciated and certainly helps me to feel a little calmer about "things" and perhaps also more determined to find a better way forward.

I received the above mentioned information on my e-mail through a site called "Patients Know Best", which supposedly was originally set-up, to inform patients per e-mail about their next medical appointments, blood-test-results etc. and of course, I originally signed-up, because it seemed logical and I thought it would be such a brilliant idea, if I know my blood-test-results, sent to me by e-mail, without having to ask and/or beg for the results in person.

But, unfortunately, over time it seemed to have started to deteriorate, as sometimes happens to some brilliant ideas. Of course, I still receive my blood-test-results and next appointments etc. (which is the brilliant side of it) but unfortunately, I also receive regular medical Questionnaires (sometimes on a weekly basis) to be filled in for medical research, i.e. questions about my emotional "feelings" about covid-lock-downs, also check-ups per computer-questionnaires, whether I "feel" or notice any covid-symptoms etc. Of course, in the beginning I was obliging, because I was grateful to receive my blood-test-results etc. so easily, but "the whole thing" is now beginning to become a little too intimidating and, I feel as if I am now not only supposed to pay-back their efforts to send my blood-test-results by e-mail, but I am made to feel that it is my duty to do so and it was also "them", whoever they are, who sent my medical details, without the courtesy of asking me first, to a hospital, where I don't even visit and/or consult with any medics...

...  I might perhaps be a bit old-fashioned, but I do feel, that "Patients Know Best"  are taking liberties ... just think about the name they chose to call themselves, it seems just a bit
preposterous ... because ... after all, Patients don't really know best, otherwise we would not need to go to a doctor, would we ? ... and I wonder, because it does not seem such a good idea any longer and even though it was very much more complicated to receive a print-out of my blood-test-results "in the old days", at least I did not have to put-up with aggravation and/or liberties being taken. Their computer-language also leaves lots to be desired and does not fill the reader with confidence, because it seems like "dealing with a robot" without any human echo whatsoever... unfortunately ...

Many thanks again from Kristina.

[kristina]

P.S. Much later today I have received a telephone-call explaining, that they only sent this info etc. to that particular hospital, just in case, as it "is in the same district and works medically on similar lines". ..

Well, I shall give it another go... and hopefully "things" start to work better in the future, one lives in hope...

Many thanks again from Kristina.

[MooseMom]

Oh, good.  I hope you feel better!