NHS database: is it a top IT priority?

By Tony Collins

It’s called the NHS database but the new “giant” medical records system is to be run by the Health and Social Care Information Centre, largely for the benefit of researchers.

Though it may help patients in the longer term, say by helping to identify what treatments work and don’t, it is arguably not the NHS’s most immediate IT priority.

I said on BBC R4’s Today programme this morning that a top NHS IT priority is providing secure links to health records so that patients with acute and chronic illnesses can be treated in one part of the NHS one week and another part of the health service the following week – perhaps in a different county – and have their updated records accessible wherever they go.

At present patients with multiple problems can end up being treated in different NHS or non-NHS centres without each organisation knowing what the other is doing.  This is dangerous for patients and gives the impression the NHS is technologically backwards.

Links can be made to existing medical records – there are millions of electronic records already in the NHS – without creating a big central database. The records can reside where they are at the moment, inside and outside the NHS, and be linked to securely by clinicians and nurses, subject to the patient’s specific consent.

Indeed patients should be able to look at their record online and correct any mistakes.

Research database

My comment on BBC R4 Today that a research database is a good idea has brought a mixed response – understandably, because are risks. We need some facts from the Health and Social Care Information Centre on who is going to run the database, and how information will be made genuinely anonymous.

The HSCIC concedes in its information material that some patient information on the database will be potentially identifiable, but it implies this is acceptable if the organisations using the data can be trusted.

Why must information be potentially identifiable? And to what extent can the HSCIC be trusted to run the database? It is, after all, managing contracts under the National Programme for IT, a scheme which Jeremy Hunt called a “huge disaster”.

How much extra will be paid to BT which runs the SUS database under the “dismantled” NPfIT? It is likely that BT’s Spine and SUS-related work will link into the new “NHS database”. Have any new contracts gone to open competitive tender?

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One response to “NHS database: is it a top IT priority?

  1. See;

    http://www.telegraph.co.uk/health/nhs/10647031/NHS-medical-records-database-halted-amid-concerns.html

    http://www.telegraph.co.uk/health/nhs/10647424/NHS-medical-records-database-risks-vs-benefits.html

    Opting out of the medical records database sharing does NOT stop my medical records being available, if I am somewhere else in the UK and my home medical data is needed by clinicians.

    Right now, I couldn’t book a hospital appointment in a hospital in an adjoining County, because they couldn’t tie my NHS number in with the national database!

    However, I have opted out of the medical records database sharing because they are going to sell the data for income (the focus) and I do not trust the Government or any so called arms length quango to protect my privacy from insurance companies and other commercial bodies.

    Sharing records with your unique NHS number, name & date of birth will identify you personally.

    Even when you opt out, they still share low level “granular” records on your health conditions etc.

    Given that supermarkets can combine data and work out who you are and profile you accurately, it will be easy for supposedly anonymised data at a low record level to be combined with other data to then identify you personally.

    This could enable insurance and other commercial companies to identify you directly, as combining the practice post code with my particular medical history, gender etc together with their records will enable data matching that strips away my opt out anonymity.

    I opt in to be an organ donor (many will choose to opt out by not joining).

    Why doesn’t this scheme involve an opt in rather than an opt out?

    Once you sell data commercially rather than restrict it to not-for-profit medical & charitable research etc then the doors open up to abuse.

    It may anyway be illegal under EU rules:

    http://www.telegraph.co.uk/health/healthnews/10585305/EU-proposals-could-outlaw-giant-NHS-database.html

    Remember these records are YOUR DATA and not the NHS’s!

    Like

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