Surveys and statistics are essential tools in identifying patterns of disesase, effectiveness of treatments and care, and in suggesting new treatments to medical research. The power of modern computing and statistic applied to this data is currently termed “Big Data”.
The NHS has a developing programme called Care.Data to gather patient data from all GP surgeries in England. The data is to be used in health services management, preventative medicine and medical research. After some public concern and some delays in the technical programme, the start to gathering data from GP surgeries has been postponed from 1st April 2014 to Autumn 2014. (continues)
There is a great deal at stake. The gains in organising the NHS and in new treatments could be important. The programme has support from the British Medical Association (BMA) and the Royal College of General Practitioners (RCGP). Support has also come from a group of some 40 well-known medical charities. These charities include The British Heart Foundation, the Alzheimer's Society, Cancer Research UK and the Wellcome Trust. They see the benefits to treatment and to medical research of gathering this data.
You can find out more about the Care.Data programme at www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Pages/care-data.aspx and about the NHS secure data centre at www.hscic.gov.uk .
Sharing of data between your GP and others is covered by the Data Protection Act and by the NHS's own data protection principles known as the Caldicott principles. Under the Data Protection Act you can ask any organisation that holds identifiable data about you to show you your own records.
This is not the only programme for sharing your data outside your GP's surgery. Unless you have opted out, a record called the Summary Care Record, detailing your current medications, allergies and bad reactions will be maintained at a national centre. This will be available to healthcare staff treating you, for example in an emergency, subject to your consent, provided that you are in a position to give it. You can find out more about NHS summary care records at www.nhscarerecords.nhs.uk.
Hospital treatment records have been collected in this way for some decades, apparently without scandal or offence. The innovation is now to do the same for general practice and community nursing and to allow these data to be linked with the hospital treatment records.
In addition, details of your medical history will also be shared on a “need to know” and case-by-case basis between your GP surgery and other healthcare and social care staff treating you, for example district nurses, hospital doctors, social workers and so on. All the healthcare and social care staff treating you are legally bound to protect your confidential data.
The proposed Care.Data programme, now postponed until Autumn 2014, will required medical histories to be uploaded to a national centre for this data, the Health and Social Care Information Centre (HSCIC). Here GP data can be linked with hospital data to allow the course of a medical condition to be thoroughly tracked. Data sets can be passed to researchers for specific projects or published. The constraints on keeping data confidential are strict and insist that it should be impossible to learn and new definite information about you from the published or supplied data. Where it is sufficient that the numbers of patients in different categories be passed on (aggregated data), that will be done, but even then there are strict limits on identifying small groups so that individual confidential information cannot be identified.
The data held at the Care.Data centre (HSCIC) will be pseudonymised so that identifying details like name, NHS number, postcode, age will either be omitted or represented by broader categories so that no individual could be identified. The identifying details are replaced by a made-up identifier which can still be used to link together different records belonging to the same individual. The programme is currently examining whether that pseudonymising could be done at the GP surgery before exporting the data to the secure centre.
You can find out more about pseudoynmised data at www.openpseudonymiser.org
It is envisaged that other secure centres may be licensed to receive this data. It is not clear whether these will be public or private centres. They will have to follow the same strict rules as HSCIC.
It is useful to realise that the HSCIC should not be organised like the Police National Computer or Vehicle Licensing Agency where thousands of staff have access to individual records, and corruption has, sadly, sometimes led to the loss of confidentiality in some cases. It should not be organised to provide identifiable individual records.
An NHS England campaign has been mounted to deliver an explanatory leaflet to every household explaining the Care.Data programme, its potential benefits and how to opt out if so desired. This doesn't seem to have been very successful. The information provided on the full extent of the programme and the powers of HSCIC have not really got across to the public at large.
The six-month postponement gives a chance for a clear case to be made for the programme, with clear boundaries delimited, so that greater public understanding and consent can be gained for the research and organisational benefits of this programme to be realised.
Reported Use of NHS data by Insurers - What is it about?
The Daily Telegraph reported on 26th February 2014 that NHS Hospital data had been given to a professional body associated with the Insurance Industry (the Society and Faculty of Actuaries). The data appears to have been anonymised individual hospital treatment episode records. The Society and Faculty of Actuaries says "by combining hospital data with socio-economic profiles, experts were able to better calculate the likelihood of conditions, with 'amazingly' clear forecasts possible for certain diseases, in particular lung cancer". This all took place as part of their work on providing actuarial tables to support "critical illness insurance". Evidently there can be no insurance without statistical data. What is not clear is whether enough data was handed over to allow the anonymisation to be broken,the Society and Faculty of Actuaries claims not, or indeed whether critical illness insurance should be supported.
The Daily Telegraph further reported that, " Last week Tim Kelsey, director for patients and information at NHS England, said it will be 'a criminal offence' for any information entered into the new giant database, which will combine GP and hospital records, to be sold for insurance purposes. However, a database which only contains hospital records remains a separate entity, with its own rules allowing greater access to third parties"
To read the Daily Telegraph report click here: http://www.telegraph.co.uk/health/healthnews/10656893/Hospital-records-…
In a statement on its website the Society and Faculty of Actuaries stated,
The research referenced in the Telegraph story was produced by the Institute and Faculty of Actuaries (IFoA), an independent, not for profit professional body. It was published in December 2013 and in the same month was presented to SIAS members.
SIAS is a non-commercial body with over 5,000 members around the world, representing and serving the interests of younger members of the actuarial profession, whilst also acting as the London region actuarial society.
The research “Extending the critical path”, was produced to provide a clearer picture of critical illness in the UK.
The research makes no pricing recommendations. It provides information for actuaries, enabling them to look at the broader experience of critical illness in the UK against their own data. It is a reference point rather than a tool used to set pricing. It is also available to any organisation or body interested in critical illness in the UK.
The research used anonymised data from the NHS that was available to organisations looking to further critical illness research. Individuals cannot be recognised from this data. The source data for this research was not made available by us to our membership or to other organisations, our analysis of this data is.
The IFoA research was particularly interested in better understanding new types of critical illness identified and included in insurance policies in the UK.
To read the Society and Faculty of Actuaries report click here: http://www.actuaries.org.uk/news/press-releases/articles/telegraph-arti…