Why sharing data is for greater good

Population graphic

The recent announcement that data from individuals' GP records would be shared with researchers inside the NHS - and potentially outside - was controversial.

In this week's Scrubbing Up, Prof Peter Johnson, Cancer Research UK's chief clinician, says while the decision is up to each of us, population data like this is crucial for making progress in tackling diseases.

Patient information is a very controversial issue.

We live in an age when all manner of information about us is collected and shared all the time and, understandably, everyone worries about who is looking at their data and what they're doing with it.

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I am as sceptical as anyone about the idea of selling the data outside the NHS, but that is not a reason to discard the whole idea”

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But using our records for medical research is not about some sort of free-for-all with people's data.

It is about doing the right thing and using the information that we collect in the NHS to benefit patients in the future.

We need the proper safeguards, and I am as sceptical as anyone about the idea of selling the data outside the NHS, but that is not a reason to discard the whole idea.

When we think about cancer research, we might picture scientists working in labs or patients on clinical trials, but this isn't the full story.

There are researchers making vital discoveries and saving lives right now, who will never touch a test tube and may never meet a patient.

These are the population researchers who work with vast databases of patient records, who have made some of the most important discoveries in medicine, and their type of research is as important as ever.

Cancer research is a huge success story, we know so much more now than we did 50 years ago.

But we don't know everything.

Dividing breast cancer cell Not all cancer research is done in the lab

Patient data can be used to answer some of the big questions about cancer: what causes it, how do we treat it and how do we cure it?

For us, one of the most valuable parts of the NHS is the National Cancer Registration Service, which covers the whole of the UK and stretches back over 40 years.

This system provided the data needed to show that mesothelioma is caused by asbestos exposure and gave us the evidence behind the new innovations in the bowel screening programme.

It gives us some of the best information in the world about how well or badly we are doing, and is vital for making sure we keep improving cancer treatments all the time.

Serious threat

But without access to people's records to track how a type of treatment works this is a wasted opportunity.

Cancer registries have already saved many lives and in the future they will save many more.

However, they are under serious threat from legislation in the European Union.

The registries collect data from cancer patients automatically, although patients can object to their details being shared.

Under the new European Data Protection Regulation, this would become illegal and we are worried our national cancer registries could collapse completely.

If cancer registration is allowed to fail in this way, a unique weapon in the fight against cancer will be lost.

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Unlike many of the people involved in this debate, I'm not here to tell you what to do”

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Our registries are a precious resource and we must protect them.

It is absolutely critical that the UK government lobbies effectively in the EU to ensure that registries and other population research is protected from this regulation.

The choice is yours.

Population research involves huge numbers, but we always remember that behind every database containing a million pieces of information, there are a million individuals and their care.

We work with information from millions of people, but every one of those has generously shared their information and is making an individual contribution to our research.

We respect that and recognise what a valuable thing this trust is.

Unlike many of the people involved in this debate, I'm not here to tell you what to do.

It's your data, it's your decision.

Everyone in England has a decision to make.

NHS England is soon going to be uploading GP records into a central database, which will be used in planning healthcare and in research.

This can be a huge force for good, if we get it right.

We need to make sure that we have rules to protect us properly, but at the same time make sure we can carry on with essential research.


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  • rate this

    Comment number 108.

    The police and security services will have access through a backdoor even if you do opt out. Don't worry, the police are totally honest all the time,
    If you don't believe me just ask Andrew Mitchell...

  • rate this

    Comment number 107.

    Healthcare rationing, the onward march of privatisation within the NHS yet the government expects us to give our information for free without making any promises as to how we will benefit. I'm sure pharmaceutical companies and other 'for profit' health organizations will do very nicely out of it though. If you want to appeal to people's altruism, maybe don't shaft them by privatising their NHS.

  • rate this

    Comment number 106.

    Release highly sensitive personal data to persons unknown for purposes not specified or which can be altered without consent at any time. Who in their right mind would consent to that? Oh yes, that's right, the vulnerable, elderly and young who haven't had the benefit of understanding their right to opt out. And there'll be a lot of them. How this got through the DPA I'll never know.

  • rate this

    Comment number 105.

    I have no problems with sharing anonymized patient data, but I would want to see the drug manufacturers sharing ALL their data as well. At the moment they only release a proportion of their data, namely the stuff they are willing for us to see. The complete co-operation of the pharmaceutical industry should be the condition of this new initiative.

  • rate this

    Comment number 104.

    I was diagnosed with stage 4 bowel cancer in 2010 at the age of 33. I am one of the few patients lucky enough to have been given the all-clear despite the cancer having spread through my liver. I have no objection to the data held by my gp being shared with the nhs. If it helps with research that would be brilliant, if it doesn't then I haven't lost anything important.

  • rate this

    Comment number 103.

  • rate this

    Comment number 102.

    "I'm not here to tell you what to do".... but ...." It is about doing the right thing" How dare you put pressure on patients - I am absolutely livid! We have family and friends who have died of cancer. If we volunteer our data for you to use, fine. We have no choice because HSCIC makes sharing all but identifiable clear data required. Hunt & Co. genome map all you want, but not with my family!

  • rate this

    Comment number 101.

    Didn't Hitler justify the extermination of 6 million Jews under "The Greater Good".

    What next, "Lean Forward"?

  • rate this

    Comment number 100.

    My point, that seems to be missed, is who cares about people's medical records? Personally, I don't give a monkeys who can see my medical records... There's nothing on there. Most people post on Facebook, every malady they have. We live in an age where we put everything about ourselves online. Believe me, there's more than enough data about us in the public domain already!

  • rate this

    Comment number 99.

    Sharing clinical data is one thing but they don't need my NHS number, name and postcode to do that.

    I woul no longer trust the NHS and am already restricting the information I give my GP.
    I think this money making scam has damaged doctor / patient realtaionships, if we can't trust our GP who can we trust?

  • rate this

    Comment number 98.

    All information should be out in the open and free to access, what are we worried about. We live in a post homosexual closet age, there is nothing you need to hide. We only protect secrets. Get rid of your secrets and you are free. Every French president, radio one DJ, Catholic priest, Lib Dem MP, Police Officer at No 10 etc know this. I covet my neighbours ox, he knows this and is fine about it

  • rate this

    Comment number 97.

    I would advise everyone to opt out and make person responsible for this idea liable for gross misconduct. I do think all statistical data should be accessible for everyone interested but this is just thievery of personal data under "greater good" blanket. It's just beggar’s belief that this data won't be sold or that it will be anonymized sufficiently to prevent identification and malicious use.

  • rate this

    Comment number 96.

    @93. Han Shot First

    If you work in IT security you'll know that your home firewall will not keep out professional hackers, especially when vulnerabilities are deliberately built into major operating systems, client devices and servers by design.

    Sure, following best practices will help protect you from mundane incursion, but don't go selling this - it gives a false sense of security.

  • rate this

    Comment number 95.

    'The choice is yours'

    Doubt it, and I cant see any justification to supply data outside the NHS. If the NHS wants to data mine thats possibly different to outside agencies

    Next step - insurance companies wanting access to determine what health risk you are. Dont think so. Well they can get access already under some circumstances, do you think they will not want to expand that

  • rate this

    Comment number 94.

    Patients should request notes of the consultation should be done in writing and scanned onto their records, the whole programme would fall apart then. If data is going to be taken without consent then the Information commissioner and the data protection act should be abolished. Our MP's should demand consultation and the whole programme to be revisited, consent is important on this issue.

  • rate this

    Comment number 93.

    @87... Considering that I work in IT, I know a fair old bit about IT security. How's your firewall at home? All your relative ports closed? And I assume, on a mundane level, that all of your mail is delivered to a PO box.

  • rate this

    Comment number 92.

    I don't think anyone objects to truly anonymous data being put to good use. It's the idea of it being turned into a commodity and sold.
    It's like part of our lives is being prostituted and consent is presumed by default.

  • rate this

    Comment number 91.

    @89.Goves Silly Temper Tantrum

    I likewise just went and opted out. If I find they have breeched that agreement, there will be lawsuits.

  • rate this

    Comment number 90.

    87. My password is always 'fish and chips'. No one ever guesses it. It's completely safe and I never change it.

  • rate this

    Comment number 89.

    I do not trust Jeremy Hunt. You can tell when he's lying, because his lips move.

    I proudly opted out of having my data shared.


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