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We must be candid about our use of healthcare data if we want to win back public trust

As the government announces a delay to a new GP data sharing initiative amid privacy concerns, Gareth Thomas, Managing Director of Wilmington Healthcare, explains why industry must move fast to rebuild public confidence.

There are few things in life more certain than death, taxes and rows about patient data. The latest argument centres on NHS Digital’s plans to introduce a new system to manage primary care data known as the GP Data for Planning and Research initiative (GPDPR).

Quietly announced back in May, the GPDPR was intended to make it easier and more efficient to collect pseudonymised GP data for clearly defined planning and medical research purposes, replacing the General Practice Extraction Service.

The reaction since then has seen the scheme dubbed an “NHS data grab” and an act of “tech authoritarianism”. Pressure groups such as MedConfidential have also got involved, while influential stakeholders such as the RCGP and the BMA have expressed their concerns about the lack of engagement and called on the government to rethink the plans.

The government, perhaps bowing to the inevitable, has recently announced there would be a two-month delay on implementation “to strengthen the plan, build a trusted research environment and ensure that data is accessed securely.”

So where do we go from here, and how should those of us who recognise the importance of good access to NHS data make our voices heard?

Supporting a stronger NHS

First, as an industry, we need to speak with one voice about the benefits that patient data brings and the safeguards already in place to protect the individual.

One of the most disheartening things in much of the commentary is the failure to concede that the use of patient data, used safely and appropriately, is instrumental in helping to improve the NHS for patients and taxpayers.

Fundamentally, the NHS needs data about the patients it treats to ensure its services and the care and treatment it provides are safe and effective.

Without good access to data, we would be unable to monitor the long-term impact of different models of care; we wouldn’t be able to learn what works in terms of improving services for different patients; and we’d struggle to identify new treatments and medicines through research and development work.

Wilmington Healthcare, for instance, works with a wide range of customers, including NHS commissioners, not-for profit organisations and commercial entities, who all share a common interest in improving the quality of treatment and the effectiveness of NHS services: without our data, they would be flying blind.

Private sector fallacy

Second, we need to take on what I call the “private sector fallacy”.

It’s been depressing to see a false narrative whipped up around private sector use of NHS data – not least because we’ve just lived through the most extraordinary demonstration of how public and private sector expertise, powered by data, can save many thousands of lives.

Without good pseudonymised patient-level data, it would have been impossible for the NHS to identify the most vulnerable people at the early stages of the pandemic; or for research teams to develop and test early treatments and vaccines; or for pharmaceutical companies to scale production and distribution of these medicines to meet patient needs later on.

If ever there was a time to make the case for how data-powered public-private sector partnerships can protect and enhance the nation’s health, it should be now. Yet what we’re seeing instead is a narrative that suggests any private sector involvement in data analysis is – almost by definition – morally suspect: a risk to patient confidentiality and an affront to the values of the NHS.

This is simply not true. The reality is that private sector organisations like Wilmington Healthcare routinely provide data services to organisations for legitimate purposes that support the public interest.  Recent examples include:

Our research fully adheres to the rigorous protocols set out by NHS Digital to ensure patient confidentiality – including use of small sample suppression to prevent the risk of pseudonymised data becoming identifiable in rare or sensitive cases – while our internal processes and security measures conform to extremely robust industry-accredited quality standards.

Crucially too, every access request we receive is subject to assessment and approval by our own Advisory Board – which includes fully independent expert advisors – to ensure it has a valid purpose that will benefit health and social care or serves the public good.  You can read about these rigorous safeguards here.

Honesty and openness

Of course, health is an emotive subject, rightly held to higher standards than other industries. That’s why it’s important we exercise honesty and openness with the public. Indeed, many would say the perceived absence of this has been what’s fuelled much of the suspicion surrounding the GPDPR.

Good communication, timely engagement and open debate are now essential for winning back the public’s trust and earning permission for the more sophisticated use of NHS data that can help us shape the next generation of care.

Much has been done since the Caldicott Report to improve the governance surrounding NHS data – anyone who works in research or data analytics will recognise the stringent processes any organisation is required to go through in order to access healthcare data.

Yet no system is perfect and part of the engagement process should be about listening to and acting on genuine areas of concern as well as recognising the practical challenges of bedding in a new system at a time when general practice is under acute pressure.

Industry should play an active part in this dialogue because, after the disaster of care data, the stakes are extremely high. Without greater transparency and candour, we risk permanently losing public consent to share data at scale, and with it the many benefits that these large and potentially integrated datasets can bring.

With the pause it has just announced, the government has bought us some time.  It’s important we use it wisely.

23rd June 2021

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Wilmington Healthcare

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