What just happened?
The MP for Stafford, Jeremy Lefroy, has introduced a Private Members’ Bill that would amongst other things mandate the use of NHS numbers as “consistent identifiers” across health and social care.
We have some concerns about potential unintended consequences of the proposed legislation but believe these can be addressed at the upcoming Committee stage, to which the Bill was sent this morning. We’ll be starting to engage with specific MPs on the Committee from next week.
What is in care.data?
As NHS England begins to ramp up again towards the ‘pathfinder’ stage (see our last newsletter) the new narrative seems to be that the data to be extracted from your GP record is only “codes”. Quite aside from the fact that each item will be associated with your NHS number, date of birth, full postcode, gender and ethnicity, these codes are not secret – they are published, and even used in adverts on the sides of trains.
To help you understand the breadth of the information to be extracted under the current version of care.data, we have put together an online tool to let you search and read the diagnoses, treatments and other ‘events’ described by the codes. All the events within the care.data GP dataset will have dates attached and be linked to every other medical diagnosis you have on the dataset, or that can be inferred from your prescriptions.
Click on the link below to search or browse the information that will be extracted from your GP record under care.data:
N.B. The page may initially take a minute or so to load as it contains a significant amount of information.
Where does your data go, and why?
You should know where your medical records have gone, and why (longer version).
Whether you have opted in or out of care.data, there are a whole host of other data flows that relate both to direct care and to all the other things that happen around the NHS. You may have a Summary Care Record (SCR), and your hospital (HES) records may – or may not – be sent to various places depending on your consent where it is applied, and irrespective of your consent where it isn’t.
If you don’t know where your data has gone, there’s no way to know whether your wishes are being respected. And when there is a problem, there’s no way to know whether you personally were affected. In September, we produced an example of such a personalised data usage report [PDF] that we believe should be available to every patient.
Without a full commitment to individuals knowing where their data goes – and this must be for everyone, not just those who don’t choose to opt out – there will continue to be mistakes caused by secrecy that would be catastrophic to public trust in the handling of NHS patients’ data.
More details on data usage reports.
What next?
Though the care.data ‘pathfinder’ areas have been announced – Leeds (3 CCGs: West / North / South and East), Blackburn with Darwen CCG, West Hampshire CCG and Somerset CCG – we still don’t know which practices will be participating, and are waiting to see exactly what patients and GPs will be told.
With new Regulations and Directions still to be published, including clarification on the definition of “promotion of health” and sanctions for misuse, and with issues such as commercial re-use and access to patient data after the pathfinder stage still to be resolved, a number of crucial concerns must be addressed before the scheme moves forward.
We shall, of course, keep you updated as more information becomes available.
Meanwhile, the next Open Meeting of the care.data Advisory Group, on which medConfidential sits, will be held in central Manchester on 26 November. This will be the third in a series of public events where patients have the chance to ask questions about care.data and hear directly from NHS England. For more details or to register to attend, please visit the Open Meeting webpage.
And finally
Thank you for all your support – to those who have been sending us tip-offs and researching particular issues, to everyone involved in organising meetings and events, and to the volunteers who are helping us handle parts of the enormous workload that comes from tackling care.data and related issues on multiple fronts.
Please do pass this newsletter on to your friends and family. They can receive future editions by joining our mailing list at http://medconfidential.org/contact/
Phil Booth and Sam Smith
Coordinators, medConfidential
7th November 2014