Here Is A Very Good Reason To Think Carefully About Participation In The Opt-Out PCEHR.

This article appeared in the UK last week.

Nearly 1 million patients could be having confidential data shared against their wishes

Calls for an official investigation as it is disclosed that at least 700,000 patients opted out to having their GP data shared with third parties only to have their demands ignored.

By Peter Dominiczak, Political Editor

6:34PM BST 05 Jun 2015

Nearly 1million people are having their confidential medical data shared against their wishes, it has emerged.

There have been calls for an official investigation after it was disclosed that at least 700,000 opted out to having their GP data shared with third parties by the Health and Social Care Information Centre in 2014 only to have their demands ignored. 

The chair of the HSCIC admitted to MPs that the organisation was unable to process the objections and said it “may take some time” to resolve. 

Furious peers this week called the blunders a “worrying situation” and called on Government ministers to order an official investigation by the information commissioner.
The 700,000 opt-outs came before the aborted rollout of a controversial a “care data” programme in March 2014. 

Officials were concerned that “a flaw in the working” of the objection could have had the “unintended consequence of preventing data flowing for direct care purposes such as cancer screening or electronic prescriptions.” 

There are fears that unless the issue is resolved, people who have opted out could be denied vital treatments. 

Despite repeated concerns about the programme, the NHS has insisted that it will continue to sell medical data to insurers and other third parties despite an investigation that has discovered tens of thousands of patient records were unlawfully sold. 

Fears were raised last year that patient records were being misused and sold to insurers, and the Government amended the law to restrict access to data. 

The disclosure that even patients who have opted out of the scheme could still be having their information shared will intensify criticism of the project. 

Lots more here:

http://www.telegraph.co.uk/news/health/news/11655777/Nearly-1million-patients-could-be-having-confidential-data-shared-against-their-wishes.html

What an astonishing story. Citizens had tried to opt out of information sharing of their GP Data and the system was unable to process them - so the sharing just went ahead.

There is more coverage here:

http://www.theguardian.com/society/2015/jun/06/nhs-data-released-against-patients-wishes

and more amusingly here:

http://www.newsbiscuit.com/2015/06/06/nhs-data-systems-diagnosed-with-incompetentitus/

Would you trust those running the PCEHR to do better - or not share your information with people and organisations you may not be comfortable with? For me I would not!

Do think about it carefully.

David.