Not to want the NHS to share my confidential medical records?

[SusanC5]

I'm unhappy that any medical information that I share with my GP will be shared as from April this year I believe. My postcode and my NHS number could be released to "approved researchers".

I do not trust the NHS with my personal and confidential information.

AIBU?

Can I just ask do I still need to send a letter to my GP?

If so, how do I make sure that my records are available across the network in an emergency but not just for general sharing use?

Gloss - there is a lot of confusion about care.data - care.data is nothing to do with the information that Doctors may need to treat you in an emergency or in fact at any other time - that's another database called the summary care record.

Therefore you can opt of out care.data without any implications to your health and need for urgent treatment.

At present I don't think they have decided as yet whether people who have already opted out of care.data will have to opt out again in the Autumn - but you can download the form from the med confidential link I supplied if you want to opt out now

As for the summary care records and any other data base (like any local ones) that medical professionals would be able to access to treat you again you can opt out of this but this would mean you have opted out of any information you may feel would help in an emergency so its your choice.

But you have to remember that your SCR will only help if the medical professionals have your name DOB and address at the time of treating you, after all if they don't know if you are Jane Doe or Sweet Fanny Adams just whose records are they going to look up, that means that there will always be contingency plans for medics to treat someone who does not have a record or one they cant access.

And of course if you are really worried and have a condition/allergy that you feel medics must have you can always get a medi alert bracelet

Hey MrsDC :) In my county only three hospitals (out of about 20 sites) have technical access to use Summary Care Records at all. But now they're setting up a local 'read-only' access system, for out of hours and so on, based on the SCR. I still want to find out if SCRs feed into secondary uses as well, or are held explicitly only in the SCR silo. There's no public documentation for all these data flows. As you say, Summary Care Records should be only used for clinical care. Whereas care.data is not for direct clinical care at all.

For others:
Further information as to how this care.data extract relates to the Summary Care Record is available in the frequently asked questions (FAQ14) available at:
www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Documents/cd-pati-faqs-06012014%203.pdf
Further information about the Summary Care Record is available at: www.nhscarerecords.nhs.uk/

Hi The ABB we have a local shared medical data sharing system call Vision 360 (I believe) any way I have opted out of that one as well
read code you need putting on your records as below

As a patient, you can ask that your own GP labels your own records with the Read codes 93C3 Refused consent for upload to national shared electronic record and 93C1 Refused consent to upload to local electronic record

Thanks Mrsdavidcaruso I hve a bracelet for allergies but have other things going on which aren't exactly an ongoing problem but would be useful in an emergency

I shall wait until we find out more

For anyone interested in care.data, the programme to share our medical records with the Health and Social Care Information Centre, since it's been quiet in the news just thought I'd share current status from my lay POV. If you are interested in keeping up to date or have questions, or wnat to share opinions, keep in touch: I post updates and thoughts on my blog here jenpersson.com, and on twitter: @theABB

The other thread is on the same subject - sorry this is duplication, but not everyone may follow both.

May 7th: There were some parliamentary amendments proposed and supported by the Wellcome Trust and [http://www.amrc.org.uk/blog/parliament-debates-the-use-of-patient-data-as-part-of-the-caredata-programme] amongst others to the Care Bill 2012, which was debated in the Lords - it went to a vote and they were rejected. They included request for a legal opt out (right now it's only Jeremy Hunt's word that there is one), a statutory independent oversight process/body, and better defined uses. Commercial uses are still permitted, if 'for the purposes of health ' and improving care. Which is a fairly broad definition as far as reasonably applicable. Details here>> [https://medconfidential.org/2014/lords-care-bill/]

There's regular meetings of the care.data advisory committee, [http://www.ehi.co.uk/news/EHI/9303/care.data-advisory-group-announced] and their members and minutes are posted here> [http://www.england.nhs.uk/ourwork/tsd/ad-grp/]

Latest connected news: [https://medconfidential.org/2014/is-jeremy-hunt-serious-about-shutting-down-insurers-access-to-your-medical-records/]

Current: The Partridge Report, an audit of data recipients from pre-April 2013 was due at the end of May. That should help clarify where our hospital records (called HES) have gone in the past, who received them and for what purposes. No update on it yet, but it seems to have been on the agenda at latest HSCIC Board meeting, June 4th. No update yet.
If like last time, it's released on the HSCIC news page it will be here - don't know when >> [http://www.hscic.gov.uk/news-and-events]

Background overview: [http://www.hscic.gov.uk/article/3525/Caredata]

For anyone interested in care.data, the six months has now passed since the second pause in the implementation, but there has not been any official update from the Patient and Information Directorate at NHS England for some time. I've put together some history, my open questions and opinion on the progress, on my blog here > jenpersson.com/care-data-pause-six-months-on/ and updates/keep in touch on twitter: @theABB

Thanks a lot of people have probably forgotten about this

My latest blog post folks on our medical records' sharing, if you're still interested, care.data has not gone away. This is the plan to extract our GP medical records into central databases for secondary uses, which is not to be confused with any sharing for our direct medical care, by medical staff. The CCG areas in which the pilot will proceed have been announced [Leeds North, Leeds West and Leeds South and East, Somerset, West Hampshire and Blackburn with Darwen], but no further details of when or which GP practices.

I blogged an open letter in the hope of getting answers which patient and public and other interested organisations have asked about in the last 6 months. Many remain unanswered, and I believe they should be answered before the pilots, for both those who are as yet uniformed or uncertain about what care.data is, and also to ensure that process and plans are as transparent, secure and sound as possible for participants.

jenpersson.com/pathfinder/ >> also on the Mumsnet blogger's network under: www.mumsnet.com/bloggers-network/activism