With a medically-orientated menagerie of clinicians, health informaticians and software suppliers meeting at HC2014, it wasn’t long before BCS Health Editor, Justin Richards MBCS, realised what was foremost on almost everyone’s mind, namely care.data.

During his introductory plenary of the second day of the conference, Professor Haslam, Chair of NICE, said: ‘It’s astonishing that despite the fact that GPs have had computers for twenty five years, the rest of the NHS hasn’t yet caught up with them and, in some cases, are still using paper-based systems!’

In fact according to Kingsley Manning, Chair of Health and Social Care Information Centre (HSCIC), in a recent audit carried out by his office it was found that 80 percent of all records were written by hand before they were retyped into a PC. Hence, it’s understandable that the recent Francis Report1 found that there was not enough good, reliable information available.

With calls for a more joined-up approach to sharing data and making available data more accessible to interested parties, NHS England rolled out their ambitious care.data programme with the intention of collecting together as much data about NHS patients as possible to be used in... Well, that’s the main problem for most the scheme’s many detractors; there are just too many unanswered questions at the moment for the public and many clinicians to be happy to get behind the programme.

According to Geriant Lewis, Chief Data Officer from NHS England, ‘Across the country there’s a lot of data missing. For example, there’s no information about in-hospital prescribing, investigations, obscurities or about care outside of hospital, and no information about social care.’

Lewis seems to think we can’t currently answer questions such as:

  • How many patients in England received chemo last year?
  • What proportion of patients in a particular hospital, were reviewed by a consultant, at least once a day?
  • The average time a GP took to diagnose bowel problems.
  • The proportion of patients on a ward who had a highly abnormal diagnosis.

Hence NHS England thinks the care.data programme will be able to help address some of these issues once the NHS has a more structured data sharing culture.

Dr Peter Flynn, Director of the care.data programme, stated that the programme’s initial priorities would include the expansion of GP and hospital data and to increase the information storage capacity at the HSCIC.

However, despite reassurances from NHS England regarding the care.data information gathering programme, stating that ‘the information would only be used benignly and that all information about patients would be stored in a secure way’, the general public and many clinicians have not bought into the idea, resulting in the programme being put on hold for six months while NHS England rethink their approach and try to bring us all on board as enthusiastic stakeholders.

According to Tim Carter, Communications & Awareness Lead, NHS England, the care.data programme ‘has been put on hold for six months in order for a more comprehensive consultation to occur with all the various stakeholders. ‘The care.data leaflet drop was seen by some as a failure and the NHS was accused of just talking a bit louder rather than actually engaging with people.

In fact the noise became so loud that stakeholders were soon asking: “what is the NHS really doing?” This then led to various newspapers creating a furore over “what the NHS is doing with our data.” It became quickly apparent at the various plenaries and discussion groups that the next six months can’t just be about awareness-raising for the programme, it has to be more substantial.

Everyone appreciates that data sharing can be a good thing (and history has shown this to be the case), but no one agrees on exactly how it should be done and what the parameters will be.

According to Tim Carter, the negative reaction to the care.data programme has ‘led the health service to try to understand what it is that people really want, take that on board and then explain how it’s going to take care of people’s data, all the while being realistic about the risks.’

It’s a fact that the Francis Report has driven the NHS to collect more data and Geriant Lewis briefed the conference saying: ‘The initial consultation revolved around what information was currently held by the health service and how easy it was to collect it.’ He then went on to say that ‘the updated consultation themes are focusing on:

  • resourcing;
  • timescales;
  • the variety in provider capacity;
  • data entry and the point of care;
  • responsibility for datasets;
  • clarity of benefits

It appears that NHS England is currently examining the barriers getting to patient data, its safety, assessing data that’s easiest to obtain (probably drug charts and patient movement from ward to ward), and looking at which data it already has access to.

The key objection to data sharing appears, understandably, to be data security. With this fact in mind NHS England has categorised data into three types, namely: non-identifiable, potentially identifiable and identifiable data and awarded them with a traffic light colour coding system.

Identifiable data is strictly controlled by the law and includes information such as a person’s date of birth or their postcode. Potentially identifiable data contains a unique pseudonym for each person and there are a wide-ranging number of safeguards in place for dealing with this sort of data. All identity and access governance (IAG) will be overseen by the HSCIC.

Identifiable data is flagged as being ‘red’, potentially identifiable data as ‘amber’ and unidentifiable data is coded as ‘green’. The Consumer Action Group (CAG) will oversee the movement of red data, the use of which will be decided by the Data Access Advisory Group (DAAG).

According to Lewis, patients will be able to access their own ‘red’ data and some universities and research establishments will be able to access ‘amber’ data. In some cases ‘green’ data will be published, at cost price. Apparently patients can halt the flow of data at any point, if they object to its transfer, although how will they know that a) their data is being used and b) for what purpose, is harder to say.

Will the NHS phone us up before they plan on doing anything with our data? The take home message from these discussions on the subject of care.data and with regard to data sharing in general seemed to be that whatever the NHS does in this space, it needs to be as transparent as possible and actually engage more with both patients and their GPs otherwise there will continue to be very limited support for this programme going forward.

Dr Ian Herbert FBCS Health, perhaps summed it up best when he said that ‘an extended and ongoing conversation about the whole data sharing conundrum needs to be had and in a transparent way.’