UK's care.data faces more delays but new evidence shows support for controversial big data project

Health is one of the industries where digital technologies, including big data, have such an obvious use case – especially in the UK, where government cuts have resulted in a desperate need to introduce efficiencies, whilst still maintaining a high quality of service.

However, as we have seen time and time again, this is also one of the areas where things often go awry. You only have to look at the disastrous launch of Obamacare in the US and the failed National Programme for IT this side of the pond.

And it appears that the UK is heading for another headline-grabbing, problem-filled project. Care.data has been rumbling along for a while now and was due to launch in April this year, but after a public and media backlash, has faced a number of delays.

The idea behind care.data is that it is a 'big data' project that will pull together all of the UK public's GP health records, store them in a central database and share them with the Health and Social Care Information Centre (HSCIC). The NHS believes that the sharing and analysis of information across the NHS will will help to ensure that the quality and safety of services is consistent across the country.

It also believes that care.data will highlight different diseases and conditions that may require more NHS investment going forward. All good stuff.

However, the NHS ran a poor PR campaign surrounding care.data and privacy advocates successfully argued that although the data being stored would be pseudonymised, where it would only reveal details such as age, location and gender, this wouldn't stop the data being matched with other databases and patients being 're-identified'.

As concerns were mounting at the beginning of the year, a leaked NHS document outlined that the data could potentially result in patients being identified. The nail in the coffin, as it were.The risk assessment said:

While there is a privacy risk that the analysts granted access to these pseudonymised flows could potentially re-identify patients maliciously by combining the pseudonymised data with other available datasets (a technique known as a jigsaw attack) such an attack would be illegal and would be subject to sanction by the Information Commissioner’s Office.

And although the NHS argued that it had carried out a publicity campaign by delivering leaflets on care.data to 26 million households across the UK, polls found that two-thirds of people had not had seen them.

The public is particularly sensitive to government snooping since the NSA revelations and there was also concern that the data stored in care.data would be shared with private companies, such as insurers. As is often the case, pressure mounted and the NHS was forced into a corner.

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Care.data was delayed for at least six months in February – meaning it missed its scheduled launch date in April of this year – and now, following the release of a new report by an All Parliamentary Group, it looks like care.data won't see the light of day until well into the new year.

The All Parliamentary Group for Patient and Public Involvement in Health and Social Care has collected evidence provided by healthcare charities, statutory bodies, Royal Colleges, NHS England and the research community – and while it found that there was undoubtedly a lack of publicity, clarity and patient involvement in the care.data programme, care.data does actually have broad support from patients and the public.

The key findings of the report were:

• Evidence taken all points towards strong support for medical data sharing in theory, which patients and the public supportive of the principle of using health data for research that is in the public interest.
• Most participants agreed that an opt-out system is necessary in order to ensure that researchers have a large enough datasets – which are representative of the population as a whole – to make the scheme worthwhile.
• However, all organisations agreed that the public had been inadequately consulted in the early stages of the Care.data programme and that it was therefore correct to halt the programme to allow further public consultation.
• There is a need for open consultation on the content of the dataset to ensure it includes data for common diseases seen in general practice.
• In order to alleviate public and organisational concerns, NHS England has also confirmed that there will be a phased roll out (pathfinder stage) for the Care.data programme, starting with between 100 and 500 GP practices in the autumn of 2014. NHS England believes this will enable the best ways of supporting GPs to ensure patients are informed of the purposes of this data sharing, its safeguards and how they can opt out, can be refined and tested with complete transparency.
• The legal penalties to be imposed on individuals and organisations who misuse or abuse patient data remain to be resolved (this is a big issue that needs to be resolved!)

However, what I found most interesting about the report is the level of support for care.data highlighted in the evidence. Yes there are concerns still – namely the sharing of data with private companies and other government departments – but generally it is evident that people think that this  is a good idea and could be a programme that benefits health in the UK.

For example, the National Aids Trust said:

We also recognise that better access to patient information could improve both medical research assessment of NHS services, and that the Care.data programme would enable this.

The Patients Association said:

In principle we are supportive of any initiative including the Care.data programme if it is for the benefit of the patients at all times and not for the benefit of the professionals or services. We strongly advocate complete and effective involvement of patients in any decisions relating to their records or their care.

Macmillan Cancer Support said:

Some of the poorest cancer outcomes and experiences are associated with rarer cancers, which can only be studied in detail using large data sets.

Parkinson's UK said:

Parkinson’s UK believe that patient data is vital to research, because it can be used to identify new treatments and therapies which essentially enhances their care programme. By the patient records being kept, researchers are able to look at the safety and value of each drug in addition to evaluating new treatments and informing health care management. Accordingly, other areas are assessed through patient data such as the calculation on the prevalence of people with Parkinson’s in the UK by accessing patient data from GP records.

My take

Yes there are concerns that need to be worked through here – namely that the public needs to be told in exactly what form their data will be kept and how exactly it will be used. This was not communicated effectively the first time around and as a result confidence reached an all-time low. Penalties for mis-use need to be introduced and NHS England needs to be able to show who is using the data and how it is being used at all times.

It is evident that care.data could be beneficial to health research. We shouldn't kick it into the long grass just because we got it wrong the first time. What's happening now is what should have happened from the beginning – a public consultation with the key stakeholders to find out how the NHS can get this right. Let's hope it listens.

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