BMJ 2014;348:g1319 doi: 10.1136/bmj.g1319 (Published 5 February 2014)
Page 1 of 2
Observations
OBSERVATIONS BODY POLITIC
Too much information? It may not be the end of the world if “care.data” doesn’t survive its ham fisted introduction Nigel Hawkes freelance journalist, London link it to other data sources, such as hospital episode statistics and death registrations, to provide a huge database from which inferences can be made and conclusions drawn. This is, so far as I can see, no different except in scale from the general practice research database, now renamed (for reasons that escape me) the clinical practice research datalink. This holds around five million records and is already the most comprehensive longitudinal patient database in Europe. What can a database of 50 million tell us that one of five million can’t? I’ve asked this question but possibly of the wrong people, as I haven’t yet had a satisfactory answer. “Better information means better care,” says a leaflet put through the front door of England’s 22 million households. As a general proposition this is unexceptionable, even trite: nobody’s going to argue that ignorance is bliss. And most people, when the proposition is put to them, agree that the sharing of medical records in an anonymised form can produce results that justify the small risks of disclosure of an individual’s personal data. There is, however, a big difference between the ideal of informed consent and a paternalistic pat on the head. The leaflet, which at first glance looks like another piece of junk mail, is vague about who owns this information, who wants to use it, and who the leaflet comes from. It explains that people can opt out but doesn’t explain clearly how and doesn’t include a form to make the process easier. It makes no mention at all of the Information Commissioner’s Office, charged with protecting personal information from disclosure, an omission likely to raise eyebrows. While it is meant to reassure, the actual message it conveys is, “We know best.” Even if that were true, it would be unwise to imply it on a matter as sensitive as this. A ripple of unease at the whole plan could yet turn into a flood and wreck it. At worst, such a debacle could bring down with it existing databases that already do virtually the same job, so it’s no surprise that some senior medical researchers who champion the sharing of medical records are becoming anxious. Care.data, as the plan is called, is the child of NHS England, though the leaflet doesn’t say so. It is costing £50m (€60m; $82m), and its aim is to extract data from general practices and
The other problems with care.data arise from its origins in the Health and Social Care Act 2012, which gave NHS England the right to direct the government’s Health and Social Care Information Centre to collect data from medical records. Since this is a statute, it makes the data exempt from provisions of the Data Protection Act. In law, this means that neither GPs (as data controllers) nor patients (as data subjects) have the right to object to the collection of the data. That right has been offered by the health secretary, but because his offer falls outside the Data Protection Act the UK information commissioner cannot set the rules or regulate the process. In effect, the very body that is meant to regulate the security of data has been sidelined by an act of parliament.
Other provisions of data protection do apply, including the obligation of the data controllers (GPs) to tell data subjects (their patients) what is happening. Yet it is NHS England, not the GPs, that sent out the leaflet and that drives the programme, together with the Health and Social Care Information Centre. Hence, I suppose, the vague provenance of the leaflet, which merely claims to come from the “NHS.” GPs understandably resent being told that the data they control are being extracted, then asked to make the necessary explanations to their patients. It’s not clear what sanctions, if any, will be attempted against GPs with high opt-out rates. Last week the junior health minister Dan Poulter dodged a direct answer when asked by Rosie Cooper MP what penalties would be applied to such recalcitrant GPs. The thumbscrew? The rack? All he would promise was that these GPs would face being reviewed by NHS England, the Information Centre, the BMA, the Information Commissioner’s Office, and the Care Quality Commission until
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BMJ 2014;348:g1319 doi: 10.1136/bmj.g1319 (Published 5 February 2014)
Page 2 of 2
OBSERVATIONS
they saw sense. OK, I made that last bit up, but that’s what he meant. Some might prefer the thumbscrew.
It would be easier for GPs if examples of the miracles that care.data will bring were more obviously persuasive. How, for example, do they differ from those of the clinical practice research datalink, which has indeed been the source of some first class studies? I believe in the power of data, but I’m less convinced by the euphoria inducing qualities of big data, any mention of which tends to anaesthetise critical thinking. They said just the same 20 years ago about data mining, but I’m not aware it has transformed healthcare—or anything much else. Let’s not be churlish: no doubt it’s had its successes. But like lots of other wizard wheezes, the telling is often better than the tale.
The lesson of data mining, the statistician David Hand said in a recent column,1 is that interesting and valuable discoveries from big data will be few and far between; that many discoveries will turn out to be uninteresting, or obvious, or already well known; and that most will be explainable by data errors. There
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are dangers of selection bias and of confusing data with information. Computers may be good at matching and sorting but are not so good at drawing inferences. If he is right, there may be less to be learnt from a single huge database than from many smaller ones.
Personally, I hope care.data survives its ham fisted introduction. But it may not be the end of the world if it doesn’t. bmj.com Observations: Privacy is theft—sharing is caring (BMJ 2014;348:g1320, doi:10.1136/bmj.g1320) Provenance and peer review: Commissioned; not peer reviewed. Competing interests: None declared. 1
Hand D. Data, data, everywhere, but let’s just stop and think. Institute of Mathematical Statistics Bulletin, 13 Dec 2014. http://bulletin.imstat.org/2013/12/hand-writing-data-dataeverywhere-but-let%E2%80%99s-just-stop-and-think.
Cite this as: BMJ 2014;348:g1319 © BMJ Publishing Group Ltd 2014
Subscribe: http://www.bmj.com/subscribe
Page 1 of 2
Observations
OBSERVATIONS BODY POLITIC
Too much information? It may not be the end of the world if “care.data” doesn’t survive its ham fisted introduction Nigel Hawkes freelance journalist, London link it to other data sources, such as hospital episode statistics and death registrations, to provide a huge database from which inferences can be made and conclusions drawn. This is, so far as I can see, no different except in scale from the general practice research database, now renamed (for reasons that escape me) the clinical practice research datalink. This holds around five million records and is already the most comprehensive longitudinal patient database in Europe. What can a database of 50 million tell us that one of five million can’t? I’ve asked this question but possibly of the wrong people, as I haven’t yet had a satisfactory answer. “Better information means better care,” says a leaflet put through the front door of England’s 22 million households. As a general proposition this is unexceptionable, even trite: nobody’s going to argue that ignorance is bliss. And most people, when the proposition is put to them, agree that the sharing of medical records in an anonymised form can produce results that justify the small risks of disclosure of an individual’s personal data. There is, however, a big difference between the ideal of informed consent and a paternalistic pat on the head. The leaflet, which at first glance looks like another piece of junk mail, is vague about who owns this information, who wants to use it, and who the leaflet comes from. It explains that people can opt out but doesn’t explain clearly how and doesn’t include a form to make the process easier. It makes no mention at all of the Information Commissioner’s Office, charged with protecting personal information from disclosure, an omission likely to raise eyebrows. While it is meant to reassure, the actual message it conveys is, “We know best.” Even if that were true, it would be unwise to imply it on a matter as sensitive as this. A ripple of unease at the whole plan could yet turn into a flood and wreck it. At worst, such a debacle could bring down with it existing databases that already do virtually the same job, so it’s no surprise that some senior medical researchers who champion the sharing of medical records are becoming anxious. Care.data, as the plan is called, is the child of NHS England, though the leaflet doesn’t say so. It is costing £50m (€60m; $82m), and its aim is to extract data from general practices and
The other problems with care.data arise from its origins in the Health and Social Care Act 2012, which gave NHS England the right to direct the government’s Health and Social Care Information Centre to collect data from medical records. Since this is a statute, it makes the data exempt from provisions of the Data Protection Act. In law, this means that neither GPs (as data controllers) nor patients (as data subjects) have the right to object to the collection of the data. That right has been offered by the health secretary, but because his offer falls outside the Data Protection Act the UK information commissioner cannot set the rules or regulate the process. In effect, the very body that is meant to regulate the security of data has been sidelined by an act of parliament.
Other provisions of data protection do apply, including the obligation of the data controllers (GPs) to tell data subjects (their patients) what is happening. Yet it is NHS England, not the GPs, that sent out the leaflet and that drives the programme, together with the Health and Social Care Information Centre. Hence, I suppose, the vague provenance of the leaflet, which merely claims to come from the “NHS.” GPs understandably resent being told that the data they control are being extracted, then asked to make the necessary explanations to their patients. It’s not clear what sanctions, if any, will be attempted against GPs with high opt-out rates. Last week the junior health minister Dan Poulter dodged a direct answer when asked by Rosie Cooper MP what penalties would be applied to such recalcitrant GPs. The thumbscrew? The rack? All he would promise was that these GPs would face being reviewed by NHS England, the Information Centre, the BMA, the Information Commissioner’s Office, and the Care Quality Commission until
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Subscribe: http://www.bmj.com/subscribe
BMJ 2014;348:g1319 doi: 10.1136/bmj.g1319 (Published 5 February 2014)
Page 2 of 2
OBSERVATIONS
they saw sense. OK, I made that last bit up, but that’s what he meant. Some might prefer the thumbscrew.
It would be easier for GPs if examples of the miracles that care.data will bring were more obviously persuasive. How, for example, do they differ from those of the clinical practice research datalink, which has indeed been the source of some first class studies? I believe in the power of data, but I’m less convinced by the euphoria inducing qualities of big data, any mention of which tends to anaesthetise critical thinking. They said just the same 20 years ago about data mining, but I’m not aware it has transformed healthcare—or anything much else. Let’s not be churlish: no doubt it’s had its successes. But like lots of other wizard wheezes, the telling is often better than the tale.
The lesson of data mining, the statistician David Hand said in a recent column,1 is that interesting and valuable discoveries from big data will be few and far between; that many discoveries will turn out to be uninteresting, or obvious, or already well known; and that most will be explainable by data errors. There
For personal use only: See rights and reprints http://www.bmj.com/permissions
are dangers of selection bias and of confusing data with information. Computers may be good at matching and sorting but are not so good at drawing inferences. If he is right, there may be less to be learnt from a single huge database than from many smaller ones.
Personally, I hope care.data survives its ham fisted introduction. But it may not be the end of the world if it doesn’t. bmj.com Observations: Privacy is theft—sharing is caring (BMJ 2014;348:g1320, doi:10.1136/bmj.g1320) Provenance and peer review: Commissioned; not peer reviewed. Competing interests: None declared. 1
Hand D. Data, data, everywhere, but let’s just stop and think. Institute of Mathematical Statistics Bulletin, 13 Dec 2014. http://bulletin.imstat.org/2013/12/hand-writing-data-dataeverywhere-but-let%E2%80%99s-just-stop-and-think.
Cite this as: BMJ 2014;348:g1319 © BMJ Publishing Group Ltd 2014
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