Patients remain ill-informed about changes to medical records

3797160719_337b4742e7_bLast week we wrote about the leaflet that every household will be receiving from NHS England detailing serious changes to the way our medical records are shared. We warned that such a lacklustre scheme to inform the public is arguably illegal under data protection law and goes against the Government’s commitment to give patients control over their medical records.

Today, the British Heart Foundation, Arthritis Research UK, Cancer Research UK, Diabetes UK, the Academy of Medical Sciences, the Medical Research Council and the Wellcome Trust have launched an advertising campaign encouraging people not to opt out of the initiative.

Quite simply, patients should not be forced, or feel pressured, to take part in a scheme that involved sharing details contained in their medical records. Especially at a time when NHS England has failed to properly inform patients about how medical records will be shared and which organisations will be able to see them.

The research charities are urging patients not to opt out of the NHS data sharing scheme. Despite the fact that they have admitted that they “cannot guarantee that the data will be 100% safe” they stressed that it was of “fundamental importance” for people to allow their records to be included in the scheme.

Of course, many patients will see the benefit of using medical data for research purposes, however others will feel uncomfortable with sensitive information potentially being shared with third parties outside of the NHS. This is a decision for individual patients to make. It is in the interest of these research charities that as many people remain in the scheme as possible, however they have a responsibility to ensure that NHS England has properly notified patients about the changes to their medical records so that they can make an informed decision about whether to participate in the scheme.

Academics and GP’s alike have also raised their personal concerns about the scheme. The Daily Mail has reported that at least two GPs are so opposed to the scheme they have removed the thousands of patients on their books from the scheme unless they have specifically asked to be included. One of the doctors, who is based in Oxford, has said that he believed the scheme breached data protection laws.

The fact remains that if NHS England wants to share patients’ information with increasing amounts of third parties they have a duty to take extra steps to ensure that patients feel as though they have control. The Department for Health must stand by the Governments commitment to give patients more control over their medical records and recognise that this leaflet drop is wholly unacceptable.

Posted by on Jan 13, 2014 in Data Protection, Medical Records, NHS | 7 Comments


  1. Rwthless
    13th January 2014

    If insurance companies could be forced to get signed permission from individuals to have a look at their records, I’m happy for the rest. The insurance industry likes to exclude everything they might conceivably have to pay out on.

    Who else might have something to gain about anonymised statistical information from health authorities?

    Anyone other than an authorised medical professional on a need to know basis should be prevented from accessing any identifiable information without the signed permission of the person involved. Research on conditions for the purposes of benefiting sufferers shouldn’t really be hampered by rules preventing self interested parties from using it.

    The drug companies don’t want any raw data to be seen if it doesn’t confirm their line of research, and never submit any to the licensing authorities. I can’t see that changing.

    • Mike Sugar
      13th January 2014

      Interesting point about Pharma’s selective use of data. I have experienced this first hand when I was told, very politely, over an excellent dinner on an all expenses paid trip to a head office, that my reseach would not be used “as it did not fit in with other researchers results.”

      That is scientifically reprehensible. It is perfectly justifiable to eliminate published >>2SD* outliers from a final conclusion, but to not include a complete study at all because the results “don’t fit the bill” is arguably fraudulent. But …. here’s my thought. If the government made it a stipluation that all data supplied via the NHS patient records MUST be included – no exceptions – in all published papers and clinical studies, perhaps that would make you and me somewhat happier about the whole process.

      *Significantly more than 2 standard deviations. A quick google will reveal more if this means little or nothing :)

  2. Mike Sugar
    13th January 2014

    In the first BBW posting on this topic I recall reading that (a) physical attendance at surgery was required to opt-out of this round of mass storage of data, and (b) previous requests to GPs to have personal records excluded will be null and void.

    Since I have not, at the time of writing, received the leaflet such assertions can only be taken as hearsay, but I am inclined to accept that they are true.

    Rather than take a mandatory hike to our local GPs to opt out, is it not possible (perhaps via a voluntary fighting fund) to get a barrister to prepare a boilerplate letter we can all use? This would need to explain the legal basis why such a letter carries more weight in law than government demands that we “get on our bikes” in order to opt out – in my case, again.

    Maybe the largely awful Human Rights Act might come to our rescue.

  3. Woodsy42
    13th January 2014

    I got my leaflet today. I read it carefully but can’t find anywhere any info about who they want to share with.
    In fact it’s worse, because they mention GP and hopital records a brief look at the leaflet suggests that they want toshare between GPs and hospitals – perfectly reasonable and I assume they do that anyhow.
    Can they be made to redistribute, this time saying who might recieve the data?

  4. Anon
    14th January 2014

    The biggest problem here is that the NHS England and those who are putting this into force are NOT sufficiently highlighting the fact that it is NOT all anonymised data. They want to use identifiable data too. I do not want any of my data shared or used without my explicit consent. Others feel differently and that is fine but why should I need to run around like an idiot trying to stop up all the gaps in the security of my personal and medical data because the government is hell bent on sharing it with every Tom, Dick and Harry for any purpose.

    Too many working with personal and sensitive data do not protect such data and the medical profession is just as bad as everyone else. This government is trying to give away all our rights to privacy and security and it just ain’t on.

  5. Cherry Gurney
    18th January 2014

    I agree with Mike Sugar. It now seems that those of us who years ago, registered our lack of consent for our info to be shared, now have to do it all over again, in conflict to earlier assurances. Who at the practice do we hold legally responsible for any breach – the Practice Manager, G.P’s? How do we word our letters in a watertight legal form, that provides no loopholes? If we see one doctor at the practice about this, what is to stop any of the other doctors leaking our information. I’m prepared to contribute to the costs of an appropriate barrister.

  6. Jane
    18th March 2015

    Those of us who are female have already had our personal medical information leave the GP surgery decades ago, when the call and recall system for cervical screening was set up in 1988. Details of ALL women registered with a GP in the UK were sent out of the confines of surgeries to be put onto the Exeter database. Because of cervical cancer being a sexually transmitted disease, the information is deeply sensitive, and doesn’t just contain information about whether the smear was positive or not, but also results in all other types of sexual infection and abnomalities being noted. It also notes which women have had a hysterectomy or not, as this would put her out of the programme. No woman was exempt, and incentive payments to GP’s meant that most of us were targeted mercilessly at every appointment.

    After objecting for years, I was telephoned out of the blue one afternoon by a woman claiming to be from the programme, demanding to know why I was refusing to attend cervical screening. I politely explained that I was against this nationally enforced STD test squared purely at women. She asked me how I could be sure I hadn’t contracted the disease, and this meant I had to explain that I had done my research and decided I was at very low risk of the disease. Of course, being an STD the next question was that my husband may be having other partners, which could pass the disease onto me. All of this to a complete stranger on the phone. Was I in the former East Germany being put under surveillance by the Stasi? No! This was in England in the 21st century. Although this happened in 2003, I know of other women who have reported being telephoned by the cervical screening service much more recently.

    And the life time prevalence of this disease? 0.6%. Cost of running this programme? £175,000,000.