Join the discussion on how we can use health information better to improve patient care
As every shopper or traveller knows, the best supermarkets and airlines have become expert at responding to customer feedback. They make skilful use of these data to offer services that are responsive to customer needs and are highly consistent in quality.
We are all aware of the financial and demographic pressures which our NHS faces. If we are to close the quality gap and the financial gap now facing the health service, commissioners must become far more sophisticated users of data on behalf of the populations we serve, and use the lessons from other sectors.
One of the unique strengths of our being a national health service is the completeness of our routine administrative data and the existence of a single, universal identifier: the NHS number. The Hospital Episodes Statistics (HES) dataset is the envy of the world because it contains information about every hospital admission that has occurred since 1989, covering the entire population of England and spanning every hospital provider nationwide.
Routine administrative data – it may not sound very exciting to the uninitiated – is a treasure trove of information from patients’ care episodes. It ranges from demographics to symptoms, to observations and investigations, through to diagnoses, treatments, procedures and results.
Increasingly, this information is being recorded and stored electronically rather than on paper; however, only a tiny fraction of it is currently fed into central flows of data where it can be collated and used for wider patient benefits.
Using data better has the potential to transform our health service, through exposing inefficiencies and underperformance, commissioning services more effectively, and achieving safer, more effective treatment for patients. For example, tens of millions of pounds could be saved simply by exposing variations in the use of generic versus branded medicines. As richer data become more available and more transparent, this type of analysis can be repeated with other classes of medication and medical devices, as well as with clinical procedures and other health and care services.
NHS England and our partners across the health and social care system are committed to having an open and transparent discussion about informatics including how best to invest in making improvements, and how people view the benefits, barriers and concerns.
I encourage you to join me at the debate at our Open House event on 21 January where you can discuss these issues online. Do visit the event website to find out what we’ll be talking about and share your views.
Tim Kelsey
Tim Kelsey was previously National Director for Patients and Information, since the publication of these blogs he has left NHS England.
5 comments
“As every shopper or traveller knows, the best supermarkets and airlines have become expert at responding to customer feedback. They make skillful use of these data to offer services that are responsive to customer needs and are highly consistent in quality.”
Er… no they haven’t.
Ever meet the “We value your call. Please continue to hold.” Of course not. you have a secretary to do that for you.
Wake up. You got the care.data wrong. Admit it.
We don’t trust you.
I don’t trust you.
The plan is good but it’s a government inspired plan so it WILL go wrong.
I would sooner trust my GP than you.
Read my lips. I DON’T TRUST YOU.
On Radio 4 Today this morning, Tim Kelsey asserted that care.data could improve cancer survival rates, where the UK performs significantly worse than comparable countries.
Presumably he has in mind countries such as Switzerland, Norway and France and implies that a comparable data sharing regime exists in those countries. Is this in fact correct or another loose journalistic assertion which reinforces the attitudes of sceptics like me?
How dare you. That’s all I can say to this nonsense. Every doctor’s oath, every promise of confidentiality, gone in a second because YOU think it’s a good idea. The statements “Nobody who uses this data will know who you are” and “stripped of all identifiers” is an outright lie and a deception of the public. It would take minutes for a mediocre researcher to map data from one database to another, identifying at least most of those records. This is a travesty of betrayal from an NHS that has chosen to disregard the public, keep them in the dark intentionally; no marketing or information has been aggressively distributed, I haven’t even heard of this until today. This entire situation should be stopped now, and reviewed sincerely.
Why aren’t patients asked how their data is stored, shared, and sold? Why is there no output of how many times records are shared, when and why? Patients are becoming more sceptical of government collected personal data and evidence already exists that patients avoid NHS care due to privacy concerns.
Sorry can’t make the event
“skillful use of these data to offer services that are responsive to customer needs”
Shouldn’t the people who have first access to the data be the patients themselves??
I have no current online access to my GP record let alone seeing it aggregated with HES (hospital) data
There is a distinct focus on increasing self care and yet at the same time I can’t access my own records. If I am to take more responsibility for myself then please let me have the tools.
I have no problem sharing my data (in a safe way) as long as I can also see it.
Shared decision-making: nothing about me without me
2.1 The Government’s ambition is to achieve healthcare outcomes that are among the best in the world. This can only be realised by involving patients fully in their own care, with decisions made in partnership with clinicians, rather than by clinicians alone.
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