Data transparency and security measures ‘inadequate’ – HSCIC chair

Sustaining public trust in health data will need a clear focus on transparency, effectiveness and security, according to Kingsley Manning, chair of the Health and Social Care Information Centre (HSCIC).

Speaking at the National Health and IT Conference and Exhibition 2014, he said the existing arrangements – instituted both by its predecessor organisations and the wider system – are inadequate and “no longer fit for purpose”. Changes will happen in the coming months, he said.

With respect to security, including physical and human threats as well as cyber security, the HSCIC chair noted that there is a fundamental shift in the level of threat being faced by the NHS.

“After becoming HSCIC chair nine months ago, I was shocked by the pace and the scale of the developing security risk,” he said. “Whilst I had been concerned with the lost disc or the stolen laptop, I had failed to appreciate the extent of the risk now posed, whether it's by highly organised, criminal hackers, extremely proficient and motivated activists, or foreign states or ideologically motivated interlopers.”

Stating that the NHS is reliant on core national information infrastructure and dependent on highly, valuable data assets; he added that the NHS is not immune to these security threats.

“Therefore in a few weeks I will be announcing a major strengthening of both the security and IG frameworks for the whole health and social care system,” said Manning. “Whilst we can never guarantee the absolute security of data we must give the public a guarantee that we, as a system, have taken all reasonable steps to protect and keep safe their data. We have no defence if we are found not to be compliant.”

He also stated there is no defence “if having collected a citizen's data we fail to use it effectively, both to enhance their personal care and to improve the care for the community as a whole”.

A common and quite reasonable assumption made by service users is that the NHS is a joined up organisation. However, currently, this is not the case. With this in mind, HSCIC said it recognises that it needs to take a “radically” different approach to ensuring that patients can be confident that their data will be accessible, accurate and reliable whenever and wherever it is needed to support their care.

Manning added: “Citizens also have the right to expect that we use their data to deliver efficient and effective care. As a system we have invested billions of taxpayers’ money in IT over the last decade. Whilst we all know of the difficulties of the National Programme we should also recognise its successes in such things as PACS and the Spine. But we have to recognise, how by comparison to other industries, we have failed to make the progress that is needed.”

In the coming months HSCIC will be extending its work on burden reduction, working to use the investment available through the Tech Fund, to support data effectiveness and productivity across all the healthcare sectors.

He added: “Whilst the use of the data to support commissioning is not well understood by the public, it is crucial to the effective allocation of resources, to monitoring service quality and for powering the transformation of clinical services. We recognise that the current arrangements for supporting CCGs and CSUs could well seem confused, and are often frustrating for our partners in those organisations. Over the last nine months we have been working to ensure these arrangements operate within the existing IG framework.

“We are now working with NHS England to establish what data flows are required by commissioners, and how these services can be provided and how we can meet the requirement that patients should have an opt-out option. Working with NHS England we will be coming forward with a series of proposals as to how meet the local needs of local commissioners.”

The HSCIC chair added that one the major areas of controversy over the last few weeks has been the sale of health data to commercial organisations.

He stated: “In reality our fees are set in accordance with Treasury guidelines, to ensure that we recover our costs, no more and no less. Ultimately what we do with the public's data is and will be determined by Parliament and we very much support the government's proposed amendments to the Care Bill.

Manning did add that it is timely to point out that there is not necessarily any contradiction between the aims of a commercial organisation and the advancement of the nation's health and social care services. “Many of the commercial information intermediaries who make use of our data releases are supporting NHS organisations to plan, transform and deliver their services,” he explained.

Quite rightly however, the public are suspicious that these arrangements are in some way unfairly tipped in favour of the profit makers. “This suspicion has been fuelled by our innocent lack of transparency,” said Manning. “I have no doubt that HSCIC's predecessor organisations were intent on operating in the best interest of the patients of the NHS, but they were working at a different time and without the glare of public interest.”

The former managing director of Newchurch Limited, a leading firm of health and information consultants, stated that if the health sector is to sustain public trust it not only needs to demonstrate that data is secure and that it is used effectively, but it needs to be transparent in everything it does. The current arrangements governing the release of data are “undoubtedly” confusing and there is inadequate representation of the public voice in HSCIC decision-making.

To combat this, he added that HSCIC will be publishing the details of all the data releases it has made since it was formed in early April. It is also undertaking a review of all the data releases made by the NHS Information Centre, and this will be published in the early summer. And, in order to strengthen the public participation, it will be establishing a joint professional/public advisory council – in 2014 – with an independent chair.

“So, let me conclude by reiterating that we very much welcome the current debate and the current level of public interest, even if it can be uncomfortable,” said Manning. “It is vital that we establish a level of trust with the public and with care professionals, not only for the HSCIC but also for the system as whole. I have no doubt as to the critical role that data will play in the health and care system of the future: we can't afford to get this wrong.”

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