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  • Health & Medicine

How your information is used is changing, and you have a choice to make

by Jennifer Boon | Analysis

13 January 2014

5 comments 5 comments

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Woman

Every day we generate a huge volume of information about ourselves, whether it is updating our Facebook page, using a store loyalty card or visiting the bank.

This can be really useful, but it’s always good to know who gets to see this data and what they’re able to do with it. Information about our health is some of the most sensitive data there is and we think that everyone should know what happens to their patient records.

This is particularly important now, because the situation is changing.

The NHS is creating a new system to share information from GP records to improve how they plan and deliver our healthcare. This affects all of us and the NHS has delivered a leaflet to every household explaining the new system.

It’s really important that everyone understands these changes because we all have a choice about whether or not our data is included in this system.

Where do we come in?

We’ve written before about how important health information is for research and we want everyone to know how secure data sharing can save lives.

The decision you make about whether or not you share your information will affect your ability to take part in research and we need to make sure that everyone understands the implications of their choices.

That’s why we’ve joined together with other research charities to run a national information campaign explaining the value of patient information in research.

Words like “information” and “data” can seem a bit vague and it’s difficult to know exactly what the link between patient information and research is. We’ve also produced the following infographic to help you visualise how your visit to the GP could translate into research. (Note: this graphic will not display properly in email, so is best viewed in a browser.)

Patient records: your choices

The way that patient records are used in England is changing.

The choices you make could affect medical research, your chances of being invited to join a clinical trial, and how the NHS is run.

What do I need to do?

If you’re happy for your data to be shared, then you don’t need to do anything - the upload will happen automatically.

If you’d like to object, or just to discuss your options, you need to get in touch with your GP surgery.

When you’re deciding what to do we want to make sure that you’re making an informed choice and, in particular, that you understand the amazing things that researchers can do with your patient information.

But, it is not for us, or anyone else, to tell you what to do. This decision is yours.


    Comments

  • Alan Henness
    15 January 2014

    One of the important issues I can see is exactly where personal identifying details such as name, dob, NHS number, Postcode are removed. Your diagram indicates that this is done *before* the data leave the GP’s surgery.

    However, I’ve read elsewhere that this is done at the HSCIC, before any further processing is carried and before attempts to match it with data from hospital records.

    This opt out seems to be controlled by a database field named 9Nu4, but I don’t understand whether this is something in GP surgeries’ records or the HSCIC’s. If all GP surgeries are running the same system, then this could well be a field in their database that would ensure identifying data re removed before being passed to the HSCIC. However, if they are not all running the same system, then it’s odd this field appears to have this unique identifier. This would seem to be more consistent with this field relating to an HSCIC system field. However, I know nothing about GP systems, so I could be completely wrong about this.

    Can anyone shed any light on this?

  • Helen Wilkinson
    15 January 2014

    Thanks Jennifer but I would expect Cancer UK as a medical research organisation to give accurate information not to leave bits out that did not seem to like! It does not create a good impression for medical research and implies the general public are not capable of understanding complex information.

  • Jennifer Boon
    15 January 2014

    Thank you for your comments Alan and Helen.

    This issue is highly complex and this diagram represents our best understanding of the way in which data will flow in the new system in relation to research. Individuals do have a right to a second objection to the sharing of data from other places where they receive care, but we left this out of the diagram so that it did not become too complex. To read more about this, see the NHS England FAQs, in particular question 8.

    This is our independent perspective and we have based this on our reading of publicly available information and on discussions with NHS England. If you would like more details about the system or like any questions clarified, we recommend following up directly with the Health and Social Care Information Centre.

  • Alan Henness
    15 January 2014

    There does seem to be conflicting information about this and even reading some of NHS England’s documents, it’s still not clear to me what is correct in terms of what the opt outs actually prevent. If Helen is correct that your diagram is wring, then it would be good if you could update the text and the graphic.

    Would you be able to do this?

  • Helen Wilkinson
    14 January 2014

    This diagram is wrong patients can tell Hospital Trusts they wish to opt out of SUS/HES data being sent to HSCIC. Reference Mr Phil Walker Director of Information Governance at the DH. DH say Hospital Trusts MUST respect patients right to opt out of SUS/HES data.

    Your information on how GP data is used is also wrong. If patients opt out NO data (care data) leaves the GP Surgery it is not anonymised. The only anonymised data that is CQRS data to enable GP’s to be paid under their contract. This is NOT caredat

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    Comments

  • Alan Henness
    15 January 2014

    One of the important issues I can see is exactly where personal identifying details such as name, dob, NHS number, Postcode are removed. Your diagram indicates that this is done *before* the data leave the GP’s surgery.

    However, I’ve read elsewhere that this is done at the HSCIC, before any further processing is carried and before attempts to match it with data from hospital records.

    This opt out seems to be controlled by a database field named 9Nu4, but I don’t understand whether this is something in GP surgeries’ records or the HSCIC’s. If all GP surgeries are running the same system, then this could well be a field in their database that would ensure identifying data re removed before being passed to the HSCIC. However, if they are not all running the same system, then it’s odd this field appears to have this unique identifier. This would seem to be more consistent with this field relating to an HSCIC system field. However, I know nothing about GP systems, so I could be completely wrong about this.

    Can anyone shed any light on this?

  • Helen Wilkinson
    15 January 2014

    Thanks Jennifer but I would expect Cancer UK as a medical research organisation to give accurate information not to leave bits out that did not seem to like! It does not create a good impression for medical research and implies the general public are not capable of understanding complex information.

  • Jennifer Boon
    15 January 2014

    Thank you for your comments Alan and Helen.

    This issue is highly complex and this diagram represents our best understanding of the way in which data will flow in the new system in relation to research. Individuals do have a right to a second objection to the sharing of data from other places where they receive care, but we left this out of the diagram so that it did not become too complex. To read more about this, see the NHS England FAQs, in particular question 8.

    This is our independent perspective and we have based this on our reading of publicly available information and on discussions with NHS England. If you would like more details about the system or like any questions clarified, we recommend following up directly with the Health and Social Care Information Centre.

  • Alan Henness
    15 January 2014

    There does seem to be conflicting information about this and even reading some of NHS England’s documents, it’s still not clear to me what is correct in terms of what the opt outs actually prevent. If Helen is correct that your diagram is wring, then it would be good if you could update the text and the graphic.

    Would you be able to do this?

  • Helen Wilkinson
    14 January 2014

    This diagram is wrong patients can tell Hospital Trusts they wish to opt out of SUS/HES data being sent to HSCIC. Reference Mr Phil Walker Director of Information Governance at the DH. DH say Hospital Trusts MUST respect patients right to opt out of SUS/HES data.

    Your information on how GP data is used is also wrong. If patients opt out NO data (care data) leaves the GP Surgery it is not anonymised. The only anonymised data that is CQRS data to enable GP’s to be paid under their contract. This is NOT caredat