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Safeguarding patients’ data

open data file in filing cabinetLast week the Government announced the delay to controversial plans to share patient data from GP records. The delay follows criticism that the public have not been properly informed about how their information will be used.

Despite a publicity campaign that involved the distribution of information leaflets to 26 million households, fewer than one in three people recall receiving the leaflets, which were not addressed to individuals and failed to contain an opt out form, and may have been passed over as they looked like junk mail rather than containing important information about changes to patients data.

I believe sharing patient data will help deliver a better health service. It will be held with identifiable features removed, and NHS England have claimed that it will help researchers to better understand causes and outcomes of illness, improve knowledge of drug effectiveness and ultimately improve patient care.

I agree with the principal aim of data sharing, when the information is anonymised, patients can opt out, and is targeted towards improving patient care. However, I am concerned that the information will be available to private healthcare companies and potentially insurance companies, who are more concerned about improving profit margins than patient care.

The Government have sought to offer assurances that it will be illegal for information taken from GP records to be sold to insurers, however, the credibility of these assurances were undermined after a number of newspapers have reported that medical records of every NHS hospital patient have been sold for insurance purposes.

A report by Inn Actuarial Society, a major insurance society, disclosed that they obtained hospital data, which covered 47 million patients, and that insurance companies have used the data to help “refine” premiums.

The hospital data was used in conjunction with information from credit rating agencies, that established lifestyle habits of millions of consumers, and the report stated that this led to increased premiums for most customers under the age of 50.

These extraordinary revelations raise legitimate questions about who is handling your data, and for what purpose, and they confirm the fears of those worried about how data could be misused within the new system. I cannot envisage any circumstances under which the NHS should have handed this data over to insurance companies and the practice must stop immediately.

I support the collecting and sharing of patient data as I believe it will improve health outcomes, however, patients must have confidence their data will be protected, and safeguarded against those who would use it for solely commercial purposes. I believe the private sector should have a limited role within the NHS, nowhere more so than when it comes to sensitive data which they are keen to exploit.

Image credit: madmaxer / 123RF Stock Photo

One Comment

  1. Robert says:

    I did not get one I would have been very interested in sending back the get out form, sadly I believe ATOS are the company doing this, they will be using the information to decided whether people can have benefits or need to have a review, then they will be sending this all out to companies that require it, or sell or buy it, of course expecting ATOS to get this right or any other company.

    Not forgetting under New Labour I had a letter saying that my medical information had with two million others people been lost, then months later it was hacked.

    I then got another phone call and letter saying sorry but we have lost your tax information if was left on a train in a laptop or it may have been in some discs we left behind.

    Then I had the best letter of all from the NHS saying Dear sir you know that blood transfusion you had well you may have had tainted blood, New Labour was buying blood from American and well we thought they had heat treated it so we did not do it, turns out they did not so you may have Aids or worse.

    Then I had the tax office again saying guess what sir we have lost your information about your child benefits, sorry about that but we are now changing all your details please beware of anyone trying to scam you.

    Trust us we are the Government.

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