30 Oct Featured Article : How New Data Laws Will Affect You
Here, we look at how the Data Use and Access Bill is poised to reshape how our personal data is handled in the UK and we also review the significant changes it will bring, with implications for the NHS and beyond.
What Is the Data Use and Access Bill?
Introduced as a cornerstone of the government’s plan to modernise data governance, the Data Use and Access Bill aims to overhaul existing data laws to improve economic growth, streamline public services, and enhance data security. Originating from a need to update the UK’s data legislation post-Brexit, the bill seeks to replace or amend elements of the EU’s General Data Protection Regulation (GDPR) to better suit national interests. The government claims that streamlining data usage and access could generate £10 billion of economic benefit. While the exact date of its enactment remains uncertain, the bill is expected to come into force within the coming year, subject to parliamentary approval.
How Will It Affect Our Data Handling?
At the heart of the bill lies a fundamental shift in how personal data will be managed, accessed, and shared across both public and private sectors. For individuals, this means their data could be used more extensively to improve services, but it also raises concerns about privacy and consent.
In the context of the NHS, the bill mandates that all IT systems adopt common data formats, enabling real-time sharing of patient information such as pre-existing conditions, appointments, and test results between NHS trusts, GPs, and ambulance services. The Department for Science, Innovation and Technology (DSIT) estimates this could free up 140,000 hours of NHS staff time annually. The government envisions that by breaking down data silos, patient care will become more efficient, reducing medical errors and eliminating the need for repeat tests.
What About Patient Passports?
Many people will have heard the term ‘patient passport’. As part of the UK’s NHS digital transformation strategy, this will be the centralised digital record that holds a patient’s comprehensive health information, including medical history, test results, and treatment notes. It’s hoped that this passport will allow healthcare providers to access a patient’s entire medical record seamlessly across different healthcare settings, whether at GP surgeries, hospitals, or through ambulance services. By consolidating data, the aim of patient passports is to reduce redundancies, prevent repeated tests, and improve continuity of care, ensuring clinicians can make quicker, well-informed decisions in critical moments.
Privacy Warnings
However, privacy advocates have said that increased data sharing must be balanced with safeguards, including protecting patient passports from third-party access. For example, one key question they’re asking is who exactly will have access to this sensitive health data? The potential involvement of multinational tech firms (known for less-than-stellar transparency records) adds to this concern. For example, the Good Law Project (a key privacy advocate), has raised concerns about the NHS’s partnership with private data firms, especially Palantir, for managing the Federated Data Platform (FDP). They argue that without sufficient scrutiny, sensitive patient data could be open to misuse or could be shared without adequate patient control. The group has highlighted potential issues with the National Data Opt-Out (NDOO), which allows patients to restrict their data from being used outside of their direct care but doesn’t yet fully cover the FDP, sparking concerns that the NDOO’s limitations might not uphold patients’ data rights effectively.
Beyond Healthcare – The Police
Beyond healthcare, the bill also proposes allowing police forces to automate certain manual data tasks. Currently, officers must log each instance they access personal information on the police database. Automating such steps could save an estimated 1.5 million hours per year, enabling officers to focus more on frontline duties. While increased efficiency is welcomed, civil liberties groups express concern over potential overreach and lack of oversight. Liberty, a UK human rights organisation, points out that “automation without accountability could lead to unchecked surveillance and data misuse.”
Infrastructure Too
The bill also introduces the creation of a digital “National Underground Asset Register,” requiring infrastructure firms to upload data on underground pipes and cables. This initiative aims to reduce the 600,000 accidental strikes on buried assets annually, minimising disruption from roadworks and construction projects.
A Digital Register of Births and Deaths
Another aspect of the bill that’s drawn attention is a plan for the creation of a digital register for births and deaths. This register is proposed to simplify how vital records are accessed and managed, with the goal of moving away from paper-based systems. Creating a digital registry should, it’s argued, make it easier for individuals and relevant authorities to access official records, such as birth and death certificates. This digital transformation will also align with broader efforts to streamline public records, similar to electronic registration in other sectors.
Consumer Data
The bill also discusses enhancing how consumer data (like energy usage or purchasing history) might be used to provide personalised services. For example, individuals could use data about their energy consumption to choose better tariffs, or purchasing data could inform tailored online shopping deals.
The Digital Revolution in the NHS
The digital revolution within the NHS is a critical component of the broader objectives outlined in the Data Use and Access Bill. The government’s new 10-year strategy for the NHS in England aims to transform how patients interact with the health service, mirroring the convenience and accessibility offered by modern banking apps.
Currently, the NHS App’s functionality is limited due to the fragmented nature of patient records, which are held separately by GPs and hospitals. The government’s push for a single, unified patient record (the patient passport) is intended to bridge this gap. As Health Secretary Wes Streeting has stated, “Moving from analogue to digital is essential if we are to create a more efficient, patient-centred NHS” (BBC, 2023).
This shift is anticipated to speed up patient care, reduce redundant testing, and minimise medical errors. For example, immediate access to a patient’s full medical history could enable faster diagnosis and treatment decisions, potentially saving lives.
Open to Abuse?
However, this digital transformation is not without controversy. Privacy campaigners, such as MedConfidential (a UK group advocating for privacy and transparency in health data usage), have expressed concerns that a single patient record / patient passport system could be “open to abuse” if not properly safeguarded. The involvement of private firms like Palantir, which has been awarded contracts to create databases joining up individual records, exacerbates these fears. As Sam Smith of MedConfidential says, “Handing over vast amounts of sensitive health data to companies with questionable track records poses significant risks to patient confidentiality”.
Too Hasty?
There has also been a public backlash against the perceived haste in implementing these changes without adequate consultation. A “national conversation” has been launched to gather public input, but critics argue that more needs to be done to ensure transparency and trust. As Rachel Power, Chief Executive of the Patients Association, said in a Patients Association Statement (2023): “For far too long, patients have felt their voices weren’t fully heard in shaping the health service. Any digital transformation must put patients at the heart of its evolution.”
The Backlash and Privacy Concerns
Despite assurances, scepticism remains. For example, the launch of the public engagement exercise was marred by inappropriate and irrelevant submissions, suggesting a disconnect between the government’s intentions and public perception. Also, reports about patient passports and usage of wearable technology (like Fitbits) to monitor health conditions remotely (to offer convenience and improved care) have also raised further privacy issues.
The British Medical Association (BMA) has expressed caution, stating that any move towards increased data sharing must be accompanied by “rigorous ethical standards and patient consent”. Critics fear that without proper oversight, personal health data could be exploited by private companies or misused by the state.
What About the Financial Aspects?
Many have highlighted that the financial aspects can’t be ignored. For example, Prof Nicola Ranger, General Secretary of the Royal College of Nursing, has said (in an RCN Press Release, 2023) that any future plans will require “new investment” to be successful and that, “Digital transformation is not just about technology; it’s about investing in people and processes to make it work effectively.”
Efficiency Gains
With figures in mind, as highlighted earlier, key examples of the efficiency savings that the proposed Data Use and Access Bill could bring by streamlining data use across sectors (especially in healthcare and law enforcement) include:
– An estimated £10 billion boost to the economy (UK government), primarily through simplifying data access and by reducing administrative inefficiencies and fostering innovation across sectors.
– Saving NHS staff 140,000 hours by standardising data formats across NHS trusts, hospitals, and GPs. This saved time could then be redirected to patient care, improving treatment speed and accessibility for patients.
– Automation of routine data tasks, such as logging access to personal data in police databases, could free up 1.5 million hours annually for the police. This reduction in administrative tasks could allow more time for frontline work, which could strengthen law enforcement efficiency and public safety.
Balancing Efficiency and Privacy
The implications of the Data Use and Access Bill extend beyond immediate efficiency gains. By fostering a more data-driven approach, the UK hopes to position itself as a leader in the global digital economy. The government asserts that modernising data laws will not only improve public services but also attract investment and innovation in sectors like artificial intelligence and biotechnology.
Public Trust Needed
However, the success of this ambitious agenda hinges on public trust. Past experiences with data initiatives, such as the failed Care.data programme in 2016, have left a legacy of scepticism. That programme sought to share GP records for research and planning but was abandoned due to public outcry over privacy concerns.
As Prof Sir Nigel Shadbolt, co-founder of the Open Data Institute, has said: “Data can be a powerful tool for good, but only if handled responsibly. Building and maintaining public trust is essential for any data initiative to succeed.”
Government Says Data Will Be Protected
In response to these challenges, the government has pledged to implement strict data protection measures. The bill is expected to outline clear guidelines on consent, data minimisation, and purpose limitation. Additionally, there will be provisions for individuals to access, correct, or delete their data, aligning with principles established under GDPR.
However, critics argue that replacing or modifying GDPR protections could weaken individual rights. The Information Commissioner’s Office (ICO), the UK’s data protection authority, has urged caution. In a statement last year, the ICO said, “Any changes to data protection laws must not dilute the rights of individuals or reduce the accountability of organisations.”
There is also the matter of international scrutiny to consider. As the UK diverges from EU data regulations, questions are being asked about the adequacy decisions that currently allow for the free flow of data between the UK and EU countries. Losing this status could have significant repercussions for businesses operating across borders.
Looking Ahead
The Data Use and Access Bill represents a significant step towards modernising the UK’s data infrastructure. While the potential benefits in terms of efficiency, economic growth, and improved public services are substantial, it seems clear that they must be carefully balanced against the imperative to protect individual privacy and maintain public trust. The coming months will be crucial as the bill progresses through Parliament and the national conversation unfolds.
What Does This Mean For Your Business?
As the Data Use and Access Bill stands poised for implementation, it signals a transformation across public services, private enterprise, and individual rights. For the government, this legislation offers a pathway to harness data as a tool for national progress. The projected £10 billion economic boost, alongside potential time savings within the NHS and police forces, embodies the bill’s intent to streamline services, foster efficiency, and support sectors such as artificial intelligence and biotechnology. For the government, success means creating a framework where data is a secure, accessible resource that fuels growth, with implications not only domestically but also in terms of the UK’s reputation on the international stage.
For the public, the stakes are particularly high. On one hand, individuals stand to benefit from improved public services, from faster healthcare diagnoses and treatments to enhanced law enforcement capabilities. But this convenience comes with concerns around privacy, choice, and transparency. Past data initiatives like Care.data have shown that public trust can falter without robust consent frameworks and clear assurances on data security. Therefore, establishing transparency and giving individuals genuine control over their information are pivotal if the public is to feel safeguarded rather than surveilled.
In healthcare, the NHS’s anticipated transformation via digital records and patient passports could make a tangible difference in patient care given the estimation that it could free up over 140,000 hours in staff time to improve responsiveness and patient outcomes. However, this potential relies on more than just technical feasibility. For example, some would say that significant investment in staff training and infrastructure, as well as strict privacy protocols, are needed to prevent data misuse. Partnerships with private tech companies, which bring efficiency but sometimes questionable records on transparency, will need to be tightly regulated to ensure that patient data is handled responsibly and ethically.
The police, meanwhile, are expected to gain valuable hours through automation, potentially redirecting 1.5 million hours away from administrative duties to active police work, which many would welcome. However, without careful oversight, automated data access could risk privacy rights and lead to unintentional overreach, a concern for civil liberties advocates who call for accountability mechanisms to match this increased efficiency.
Third-party companies, particularly in tech, are also significant stakeholders in this bill. The opportunity to innovate and participate in data-driven public projects is substantial, yet comes with the responsibility to uphold rigorous privacy standards. For UK businesses, especially those relying on cross-border data flows, alignment with international data regulations will be critical. Divergence from GDPR raises questions about future adequacy agreements with the EU, impacting data-dependent enterprises if this alignment weakens.
As this ambitious bill moves forward, its success depends not only on the economic and operational benefits it promises but also its commitment to protecting individual rights and maintaining public trust. Establishing transparent, secure data frameworks that place privacy and consent at the forefront will be essential. With appropriate safeguards, the Data Use and Access Bill could indeed lead the UK into a new era of responsible data innovation. Without them, however, it risks compromising the very rights it aims to modernise.