I recently spoke at a Westminster Health Forum event focused on patient records and patient data in the NHS in England.

It was an event that raised some interesting discussions on the development and use of patient data from a policy and research viewpoint, as well as focusing on the security and privacy of such data and building public trust that data will be used to support improvement of healthcare services for populations across the UK.  

The panel I was on had the specific focus of ‘examining the future of data management, integration and the Federated Data Platform’ – a very interesting topic considering the digitisation of patient records in the NHS over recent years.  

With the establishment of electronic health records like Summary Care Records and Shared Care Records, and new tools available like the NHS App and the evolving Federated Data Platform, there’s now greater potential for access to safe and secure sharing of a patient’s information across different parts of the healthcare system to improve delivery of care.

Given the challenges the NHS faces, whether it be waiting times, service access or wider population health management, we know it will require high-quality, robust data to create an evidence base to show where statistical variation and opportunity exist.  

This, at its core, relies on access to data and effective data management. In this context, data management being the collection, organisation, storage and protection of data.

Why is data management so important?

The NHS, unsurprisingly, has lots of data, perhaps more than most industries. At the same time, it doesn't tend to utilise it in the way that those other industries do.  

Managing data effectively is of vital importance because robust, high-quality data directly impacts patient safety and quality of care, reduces errors, and ensures crucial patient information is accessible when needed.

This could lead to improved patient outcomes, with more personalised treatment plans and improved health outcomes, as well as the data required for more efficient healthcare delivery and reducing wait times.  

More broadly, there is the potential opportunity for enhanced research opportunities that can arise from access to a broader dataset. This could ensure the right services are in place for populations and support future public health policy, initiatives and interventions.

Where are we currently with data management practices?

What we have now is the increased use of Electronic Health Records, which allows for more standardised approaches to data collection and aggregated analysis.  

However, this often comes via centralised internal data warehouses that pull data from multiple systems. This is where things get trickier, as there are often different levels of access, or requests for more data collection than is required - largely because the off-the-shelf PAS system is trying to be everything for everyone.  

This often means those in patient-facing roles are in organisational silos, creating data collection workarounds for their service workflows. They don’t see the data that they could derive insight from to make things better for patients.  

This local data then retrospectively forms the basis of national datasets such as Hospital Episode Statistics (HES). Whilst it has valid use for planning, it can’t be used at scale to manage real-time operational needs within an organisation or across an ICB geography.  

With the Federated Data Platform, there’s hope that local instances have the potential to be used for operational management. While centralised instances at ICB/national level will have the potential to allow for the sharing and analysis of health data across different entities.

What are the technical challenges in data management?

Within this wider sharing of patient-level data, there are concerns in how it is safeguarded against breaches and unauthorised access.  

These are legitimate and a lot of thought goes into ensuring compliance is within legal and ethical standards, including data protection regulations. I believe it is entirely possible to create the mechanisms that allow for the benefits of data use to be realised without putting privacy at risk.

Another challenge I see revolves around difficulties in integrating data from diverse sources and maintaining data consistency and accuracy across different systems. Without focus, the variation on data quality - due to systems, processes and behaviours - will impact the value of utilising patient records way before we talk about privacy.  

Whilst this limitation is often related to funding and technology that has been procured over time, it’s important to find ways to create data management structures that do this. This would mean ICB-level, true population health management can be achieved as records across different levels of the healthcare system can be analysed to create appropriate services and access for patients.

What are the strategies and solutions for better data management?

There are numerous ways to adopt security measures to protect data from unwarranted usage. Technically, it’s through encryption, multi-factor authentication and protecting individual’s privacy with anonymised and pseudonymised patient records when they are shared more widely.  

You could also put in place access arrangements around a clear purpose and hypothesis by individuals or organisations that are trained and accredited to do so, like with the Open Safely research database.

Further, there’s significant scope for finding ways to increase interoperability between different health IT systems – perhaps through standardised protocols and APIs, as well as enhancing the quality of data with regular audits and standardised data entry protocols. This may mean that many organisations need to think about how it can future-proof its IT infrastructure as many are not in a place to effectively do this at present.

Finally, there will need to be an investment in training and change management through implementation and transition to new ways of working. Everyone has some responsibility in the way data is being managed and there needs to be greater clarity on how each role within a workflow enhances and impacts the data that’s being collected.  

A real opportunity  

There is a fantastic opportunity to enhance healthcare outcomes through patient records – but, at its core, data must be managed more efficiently, securely, and effectively.

Initiatives like the Federated Data Platform and Open Safely go some way to finding the balance between the opportunities and challenges discussed here. But we must also acknowledge there is still a lot of work to do to create population-level datasets that could re-imagine the way care is delivered.

I’m optimistic about the future, for the use of data in the NHS leading to a more efficient and effective healthcare system. However, we must be mindful - not just on the adoption of new technologies and the growing curiosity of AI, but on the technical and behavioural foundations that will be the enabler to the better use of data.  

That means more training and ownership of all elements that make up the data management process.

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