Care.data loose ends need tying up now

Parliament’s select committees perform a vital interrogatory function in our democracy. They put legislation through a “stress test” and can conduct inquiries into any matter within their remit that they deem to be in the public interest.

‘Much of the criticism of care.data has revolved around whether it will be an opt-out or opt-in system’

The Health Committee began one such investigation during the last Parliament.

Starting early last year, the inquiry was initially set up to look at the implications of the care.data programme, the NHS’s flagship project to bring about better integration, digitisation and interoperability of patient records across care settings.

Addressing critics

It was subsequently broadened to look at how the NHS handles patient data more generally.

The inquiry was critically important. Care.data has become mired in controversy following its attempted introduction early last year.

There was criticism that a leaflet drop to patients failed to properly explain the rationale of the project or patients’ right to opt out of having data stored by their GP shared beyond the surgery.

Fears were also raised that it could result in health information being improperly accessed in ways that could be intrusive or damaging to individuals.

‘The inquiry was essential to ensure public confidence’

So the decision to conduct a thorough inquiry based on evidence from some of the key players involved – including NHS England, the National Information Board and the Health and Social Care Information Centre – was essential to ensure public confidence.

Out of time

The problem is, the inquiry didn’t report, as it ran out of parliamentary time. So now we’re in the position where the incoming committee will need to decide which elements of leftover work it wishes to continue with, if any.

This is despite several members still expressing scepticism about care.data at the end of the last session in January.

Under the current care.data plans, bare-bones information from GPs, including your NHS number, date of birth, gender and postcode, as well as coded details about health conditions, will be combined with hospital records by the information centre.

‘It is possible through legal and technical protections to minimise the risks’

Once this has happened, identifiable information will be stripped out and replaced by a reference number. This process is called “pseudonymisation” and it is already routinely used in health statistics to mask individuals’ identities.

Although pseudonymisation helps protect people’s identities, it is still possible to identify individuals from this type of data in certain circumstances, if there is prior knowledge about the patient.

But it is possible through legal and technical protections to minimise the risks while still realising the huge benefits we can get from the data.

It’s already illegal to proactively identify someone from pseudonymised data, and you can receive hefty fines from the Information Commissioner’s Office for doing so. Making it a criminal offence could further strengthen this.

Mass opt-outs

Much of the criticism of care.data has revolved around whether it will be an opt-out or opt-in system. GPs have taken different views, but up to a third have said they could opt-out their entire patient lists due to concerns that the data won’t be sufficiently protected once it reaches the information centre.

NHS England has responded to concerns by announcing that the care.data principles – including the opt-out process – will be piloted in CCG areas in Leeds, Somerset, Hampshire and Lancashire before a wider national roll-out. These are expected to start imminently.

‘We can get a much better idea of what is working for patients and what isn’t’

It wouldn’t surprise anyone to learn that a company like Dr Foster Intelligence, whose business is to work with the NHS to analyse data and produce information and insight from it, thinks having fuller data records is a good thing.

But is the point that this is a good thing for patients today – and indeed tomorrow – as clear?

We would expect the health service to share their records on us so that a hospital knew, for example, whether a GP had prescribed us certain medications, whether we had any allergies, or if we’d experienced mental health problems.

No one wants to have to explain all of this information afresh to each medical professional they encounter.

Fix for disconnects

But as well as creating a better experience for individuals across primary and secondary care, there are wider benefits to having more complete information.

For instance, it can be argued that the lack of integrated data systems means there’s currently disconnect between the services commissioners are buying and the health needs of the populations they are responsible for.

But perhaps more importantly, if we can follow patient pathways from a first GP appointment through to hospital treatment and aftercare, we can get a much better idea of what is working for patients – and what isn’t.

‘Just as a blood donor makes a small but vital contribution to individuals they will never meet, so do “data donors”’

Just as a blood donor makes a small but vital contribution to individuals they will never meet, so too do “data donors”.

Sharing the data we all generate helps to make the dataset on which important research depends very much stronger; linking data across care settings gives a much fuller picture of where there may be gaps in primary or secondary care today.

So it’s essential that concerns around how data will be used are fully addressed in a final report from the new Health select committee. This is too important an issue to be a loose end.

Liz Little is UK client director for Dr Foster