Launch of new GP data-sharing system delayed amid privacy concerns

Plans to allow an NHS system to extract patient data from doctors’ surgeries in England have been delayed amid concerns around privacy. It follows the launch of a crowdfunder by five organisations and an MP who aim to stop the “NHS data grab”.

Data grab

The Canary reported that:

the Tories flogging off our medical data isn’t new. Previously, a single government body was doing it, and the government claimed that it was all legal. It also said that people’s info was anonymous, but some campaign groups disagreed.

A coalition group made up of Just Treatment, Doctors’ Association UK, The Citizens, openDemocracy, The National Pensioners Convention, and David Davis MP launched a crowdfunder to challenge the “data grab”. The crowdfunder read:

On 3 June Just Treatment, Doctors’ Association UK, the Citizens, openDemocracy, the National Pensioners Convention and David Davis MP sent a legal letter (a letter before claim) to the Department of Health and Social Care and NHS Digital. The legal letter says that rushing such a major change through with no transparency or debate violates patient trust, and doing so without seeking patient consent is unlawful. The case asks for a halt to the GP data grab with an injunction, and to rethink and seek meaningful patient consent.

Data sharing

The new GP data-sharing system was due to start in July but has been pushed back to September 1, a health minister told MPs. Health minister Jo Churchill insisted that the data programme will still go ahead this year.

The coming weeks will see the plan “strengthened” and work undertaken to “ensure that data is accessed securely”, she said.

The information commissioner welcomed the delay to the launch. Elizabeth Denham said there remains “considerable confusion regarding the scope and nature” of the programme.

The scheme will collect information on people’s treatments, referrals, and appointments over the past 10 years, alongside other data from medical records held on GPs’ systems.

The collected data is coded by NHS Digital to protect patient identities.

Churchill told the House of Commons:

Data saves lives, it’s as simple as that. We’ve seen that in the pandemic, it’s one of the lessons of the vaccine rollout.

The GP data programme will strengthen this system and save lives and patient data is of course owned by the patient.

And we are absolutely determined to take people with us on this journey. We have therefore decided we will proceed with the important programme but we will take some extra time.

As we have conversed with stakeholders over the past couple of days, the implementation date will now be on September 1 and we will use this time to talk to patients, doctors, health charities and others to strengthen the plan, build a trusted research environment and ensure that data is accessed securely.

This agenda is so important, because we all know in here, data saves lives.

Data

Simon Bolton, chief executive of NHS Digital, said:

Data saves lives and has huge potential to rapidly improve care and outcomes, as the response to the Covid-19 pandemic has shown. The vaccine rollout could not have been delivered without effective use of data to ensure it reached the whole population.

We are absolutely determined to take people with us on this mission. We take our responsibility to safeguard the data we hold incredibly seriously.

We intend to use the next two months to speak with patients, doctors, health charities and others to strengthen the plan even further.

The programme, GP Data for Planning and Research, will supersede a 10-year-old system which “needs to be replaced”, NHS Digital said.

It will not collect entire GP records.

And all the data will be pseudonymised before it leaves the GP surgery to ensure patients cannot be directly identified from the data.

Information will be accessed by organisations “which will legitimately use the data for healthcare planning and research purposes”, and all requests will be subject to independent oversight and scrutiny, NHS Digital said.

Patients will be able to opt out.

“Considerable confusion”

Information commissioner Denham said:

I welcome the decision to delay the launch of the General Practice Data for Planning and Research (GPDPR) data collection scheme.

The appropriate use of health data is an important part of health and care research and planning in England, and better sharing of health data could offer substantial benefits.

However, it is clear that there remains considerable confusion regarding the scope and nature of the GPDPR, among both healthcare practitioners and the general public. This includes how data protection rights can be exercised in practice.

It is sensible for NHS Digital to take more time to engage with its stakeholders, and consider the feedback it is receiving about its plans.

She continued:

The success of any project will rely on people trusting and having confidence in how their personal data will be used.

Data protection law enables organisations to share data safely and, when it comes to using health information, there are particular safeguards that must be put in place to protect people’s privacy and ensure effective transparency. This ensures people’s data isn’t used or shared in ways they wouldn’t expect.

We look forward to continuing to engage with NHS Digital regarding this important project.

Communication

Shadow health minister Alex Norris said:

This must now mean that all elements, including the opt-out, are delayed and there must be a full public consultation about this issue before the data collection is resumed.

Leading GPs also welcomed the delay.

Professor Martin Marshall, chairman of the Royal College of GPs, said:

It is essential that this time is used to properly communicate with the public and with clinicians so that patients and GPs have trust in the programme.

He added:

Surveys show that most patients are happy for their data to be used for legitimate planning and research purposes, but this must be built around trust.

What data will be shared, with which organisations, how and why this will be done – and, in particular, what safeguards are in place to ensure data is not used inappropriately – must be communicated effectively with patients and healthcare professionals, so that they have trust in the programme.

GPs

Dr Farah Jameel, executive team member of the British Medical Association’s GP Committee, said:

We know from our members that many family doctors feel that all their patients may not yet know what’s changing, and many practices do not believe that they themselves have been given the right level of information nor adequate time to comprehensively understand the programme, its merits and the safeguards it will operate within.

It’s clear that previous communication from NHS Digital on this programme has, frankly, been either inadequate or non-existent.

While the BMA understands that data-sharing plays a key role in planning and research as well as developing treatments, we also know that the crux of the GP-patient relationship relies on trust, transparency and honesty, and therefore allowing the public to make fully informed decisions is paramount.

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  • Show Comments
      1. wow. its violating our human rights. this is whats the issue. not doctors in the nhs oaths. US. you me , our personal information about our health, we can hardly access it ourselves.

        our human rights needs to be taught in the curriculum,

    1. This really shouldn’t even be up for consideration. So they want to sell our medical data to places like uni and research. What research, My daughter is in Uni. im so Proud, What business is it the Uni has my medical history in relation to my daughter.

      2 years i been trying to access my data about mental health records, 6 years of gaslighting me, Leaving me and my family in a dangerous situation while childrens services watched me crumble,
      Accused of abandoning my beauiful baby i was finally found not guilty but by then it was too late they were adopting my baby out no cares for me and my eldest. Why? It was in the babys best interest, future emotional harm i will give her, so to keep her safe they hid her in the UK under a forced adoption.
      Diagnosis ive got have only been used to blame/excuse their shitty behavour. .
      When i attempted suicide last year i was lucky to wake 2 days later. Then discharged me saying i was Challenging, Paranoid and not committed to change. I have asked often to give clarity and reason why such words been used. If you record im paranoid please add how this presents in my life. I agree i am paranoid but that is not a bad thing, this makes me cautious of people, sexual abuse was ignored when i reported it, but is written in in such awful terms on my records. i had no support for this.
      They have lost so much i my information and now they want to sell it.
      Please , i cant even get them to be accountable for how they have written me up so awfully with lies at my lowest moments.
      They have social Media , yet no medical book like, “hey login in here put ur nhs number in, few more wierd details ,Bam look your records., want an appointment sweet, email the surgery, want a few health tips blah blah.
      There was never any option for digital communication with then , in fact when i asked for an email address that i could communicate through as found phones calls difficult i was told ” THEY DONT GIVE OUT THAT PERSONAL INFORMATION”
      6 years emotional trauma from them they now ignoring so many avenues ive tried asking for a meeting to discuss my records as im disgusted with it. Slander is polite description i think.

      i said my last goodbyes to my mum on the 10th june. its a blur, i lef the hospital bruised from the scrity man throwing me off site for crying to loud. he wasnt interested i was upset i wouldnt see my mum again. she caught covid in that hospital while having a gall bladder removed last year. Her last days and wow, they have no consideration of dignity.
      No place to calm after i stumbled through the hopsital an overwhelmed sobbing mess, i didnt want to leave my mum…trying to find way out get cab home, my heads were like lead my heart and head felt like it would explode, neck of tears, As i fel against a pillar for support overshadowed by a huge security man i freaked even more. could barely breath but was now trying to explain to big burly men why im upset, my mum , Shes gone! because of you, im shouting, im told im too loud , shut up, calm down, yet when i tell them to back off then give me space ,im walking away, they following me in numbers. trying to call cab no support im then marched out grounds and left in a busy road entrance. Im almost run over after ive just said goodbye to my mum and only now recovering enough to be writing this.Hence the grammer.
      NHS have literally no regards for our lives and dignity. i will happily give consent for my records to be made available to limited required people to highlight the kind of digital data they will to sell thats WRONG.
      .

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