Lack of trust, not privacy, underpins fears about care.data

Making links is one thing, broken trust another. Indy Slug

Jonathan Freedland is right to argue the value of linking health datasets for information and research purposes, as the NHS’s care.data scheme plans to do with information for people living in England. Similar systems have been implemented successfully elsewhere, including in Scotland, Wales, the Nordic countries, Western Australia and British Columbia.

There is a big campaign to encourage people to opt out of the new care.data system by telling their GP that they don’t want their health records uploaded to it. This arises from considerable confusion over what will and won’t be seen. Contrary to what some campaigners have said, the system is completely separate from that in your summary care record, which contains information shared between individual patients and their doctors.

Side effects

Instead the aim is to link together coded records from GPs with information such as which health problems they have diagnosed and what prescriptions they’ve issued, with similar records of care provided in places such as hospitals. This will make it possible, for example, to see whether people with particular types of operations have side effects about which they might need to consult their GP. Names and addresses won’t be included but for data to be linked, records will include people’s dates of birth, postcode and unique NHS number. Identifying information will be removed in records released for analysis.

Linking data like this can only be a good thing. We (somewhat) happily share data already – even of a much more personalised nature – so why when it comes to health do we become so entrenched against the idea?

The worries may have less to do with privacy per se and more to do with the climate of distrust that exists in health. Freedland suggested that we don’t even seem to trust our doctors, but it seems more likely that the mistrust is of government. In particular, there are concerns that names and addresses will be released to commercial organisations.

Private sector leaders

In other countries, systems like these are usually led by universities which work with health services and other public sector organisations to do the work. Care.data is being led by NHS England, which has commissioned the work from the Health and Social Care Information Centre. Its failure to establish public confidence which has resulted in continuing fears that the data will be used for commercial purposes may be because of the number of people from the private sector occupying key roles in both of these organisations.

Leading care.data for NHS England is Tim Kelsey, the NHS’s national director for patients and information, a former journalist and co-founder of Dr Foster, a company which has been the subject of a critical parliamentary Public Accounts Committee enquiry. Kingsley Manning, founder and managing director of health and information consultancy firm Newchurch, has been appointed chair of the Health and Social Care Information Centre, whose new chief executive also comes from the private sector.

Questions need answers

The government has yet to respond to very real fears about privatisation by answering key questions about care.data. What routine analyses will be done of the data and will they be done in the Health and Social Care Information Centre and published in line with the National Statistics Code of Practice or will they be outsourced to private countries such as Dr Foster and Newchurch?

Particular issues also arise with Commissioning Support Units, the organisations that do analyses for the GP-led Clinical Commissioning Groups. They have no basis in law and are temporarily hosted by NHS England. Plans to float these organisations on the stock market have been suspended in favour of turning them into social enterprises, staff mutuals, customer-controlled social enterprises or joint ventures. But these new vehicles will still be in the private sector. Clinical Commissioning Groups can take the work back in-house but will they do so?

It has been announced publicly that NHS data will be sold off to private companies. Will private companies wanting to access the data have to go through the same extremely rigorous procedures as academic researchers who apply to access data for research purposes – and if so, will there be prohibitions on commercial uses and will this be policed? Will the companies actually gain ownership of the data? This is not the case for researchers.

More recently we’ve heard assurances that this sell-off for commercial purposes won’t happen. But the current climate and the fall-out over NHS reforms mean that essentially we worry that a promise might be made and easily broken later.

Even more worrying is the knock-on effect. As well as being allowed to opt out of care.data, people are allowed to opt out of any other use of data about their health care. This brackets together use by private companies with use of health data for research and audit, so people are opting out of this as well. Use of personal data for health research does have considerable public support, so a wide range of publicly and charitably funded research is being undermined by the mistrust of commercial use of data.

Other questions arise even if patients opt out of care.data. What is the position of patients registered with practices owned by companies such as Virgin, Serco or The Practice plc? Do these companies use their patients’ records for commercial purposes even if they opt out of the national system? And what happens with data about other health services outsourced to private companies – will the companies use the data for their own commercial purposes?

Unless the government addresses public concerns by providing satisfactory answers to these questions, England will not only lose the opportunity to establish care.data as a potentially valuable national resource, but other research may also be affected. And opting out will make it even harder to monitor the impact of privatisation on Britain’s health care – which could also play into the hands of the private sector.