Do you care who sees your GP records?

An update on care.data. I am definitely worried.
www.opendemocracy.net/ournhs/jane-fae/is-selling-our-medical-data-to-insurers-crime-or-not

wish anyone luck trying to read my doctors records, all the doctors I have had since I left the doctor of my childhood and complained about not being able to read his writing, or the doctor I had as a baby
have only been to hospital since really for the babies . think I have seen my current doctor once.

I am really torn on this issue, it worries me too, but a friend has sadly just had to find a home for her 96 year old mother, and has had assessments from various health departments, various branches of social workers, hospital and Drs and NONE of them knew what each other was doing. One day she had to repeat the same information five times, in a week she reckoned on having to do it a minimum of three times a week over the past two months. If it had just been her it wouldn't have been as bad, but her poor bewildered mother was not coping with it at all well, she said it made her want to give in and she would have done if she hadn't been desperate to get some help.

Sorry I have been away, working on this. So glad you have found the thread again, happy to answer any questions if I can.

The delay should result in a full review, Tim Kelsey is still blaming the upset on poor communication. (This is the second delay because of failure to make people aware, the first one resulted in the leaflet drop decision, they were tucked inside pizza menus, or never delivered at all (latest survey says 67% unaware after the campaign, so congratulations for finding this thread!)

Things that should be included in the review -

1) Pseudonymisation at source. Dreadful word, I know, (complicated explanation alert) but means that instead of all your identifiable data except name and address going up as will happen now, it is all stripped out bar a string of unintelligible numbers. Data from hospitals and other sources can be treated in the same way, and will come up with the same string for each patient, so the data can be linked for research purposes, but the patient's identity is not revealed. This is technically possible already, but would make it more difficult to sell on, as not so desirable to clients (or the Health and Social Care Information Centre!)

2) Opt in, not opt out. The concept of being able to 'donate' your data for research is an attractive one, and should be fully examined. However the main problem is that we are a naturally lethargic population when it comes to opting in to anything, look at kidney donation for example. This would mean the data would be less valuable for research, and could be skewed, as the population who did opt in would not be truly representative of the population as a whole.

3) Do we actually need a massive database? Data could be extracted as required and approved, to meet specific research requests. This would fit the Data Protection principle not to take more data than necessary, and to keep it for the minimum period.

4) Could the HSCIC do the data processing, and not actually release the data itself to third parties wanting it? eg Diabetes research into eye disease could ask for a specific search to be run, and just receive the results, not the actual data.

5 A full and frank discussion with the public, on TV, newspapers, social media, websites, and including patient participation groups, privacy campaigners, researchers, the medical profession.

I think a full review, to be done properly, will take more than six months....

more info on www.care-data.info/
Opt out form www.medconfidential.org

And just to lighten things up,

paulbernal.wordpress.com/2014/02/25/tim-kelsey-discovers-care-data-is-in-trouble/

Have you noticed any full and frank discussion on this?
The government is now planning on bringing it back, with patients again having to opt out.
I think the plan is now for all the info to be stored on the cloud, so if anything it has changed for the worse.

Even if you don't have anything in your medical notes now that you wouldn't mind others finding out about, is that going to be the same in 6 months or a year? The data is not just being taken once it will keep being taken and updated all the time. See your doctor today and by the end of the month they will know why you've been and what treatment you had. You don't know who is going to get their hands on this data, what their purpose is or how they intend to use it. Once they have the information you can't ask for it back! If you are at all concerned you need to opt out.