What is patient-centric data?
In simplest terms, patient-centric data is the specific medical information gathered about an individual patient from different sources to create a robust picture of the present and future healthcare needs of a patient. It could include any information on their past and current health or illness, any treatment history or previous and current contact with primary, secondary, social, or mental health care.
Why is patient-centric data important?
Effective patient-centric data gives the patient the best possible outcome in a healthcare setting. As the medical professional treating them has access to the most up-to-date information on the patient’s health journey and can consequently make the most accurate and informed decisions on their treatment plan. In the worst-case scenario, crucial patient information isn’t available to clinical staff in an emergency situation, leading to a patient’s care being compromised.
Patient data is a recent focus of the government’s new health in data strategy – ‘Data saves lives: reshaping health and social care with data’. The data strategy is a £200 million investment and outlines key commitments to give patients greater access to, and control over, their data. It also aims to simplify the opt-out processes for data sharing and improve access to GP records. Importantly, there are plans for public consultation on a new ‘data pact’, which will set out how the healthcare system will use patient data and what the public has the right to expect.
But, has this strategy gone far enough? I would argue that whilst this is a step in the right direction, there is still a long journey ahead in achieving effective patient-centric data in the UK.
What are the challenges to date of patient-centric data?
Let’s look back at prior transformation strategies within health and care to understand better the challenges of achieving patient-centric data.
There has been a pattern in digital transformation from centralised to decentralised over the past 20 years, starting off in 2002 with the National Programme for IT (NPfIT) that aimed to make the patient record available to all who needed it. This £10 billion programme was widely seen as a failure, but it did deliver some key elements that sparked some of the innovations we see today.
The NHS Spine service was born out of the NPfIT initiative, which joins together over 23,000 healthcare IT systems in 20,500 organisations. Whilst the Summary Care Records (SCR) allows any health or care worker to log into the system and, if the patient has opted in, generates a summary of a patient’s GP records and shares information on historic encounters, medication and allergies. Both approaches are aimed at providing better, safer patient care.
Then in 2011, the government moved to a more decentralised approach across the regions. There was a local flurry to build custom solutions for local needs. These tended to be proprietary solutions with different standards that didn’t interoperate. This made it difficult to link up the patient pathway across multiple health and care organisations.
In 2015, we went back to a centralised approach in digital transformation and the introduction of ‘Paperless 2020’. This aimed to give citizens access to their own records and the use of digital apps, placing the patient in control of their own health and care. The NHS app that was introduced now has 16 million users across England, providing citizens access to their records, But, yet again, in most cases they’ve only had access to their GP records and uptake was driven predominantly by including COVID vaccination passports within the app. Any further uptake will require more focus on the wider benefits to patients.
Today, we find ourselves with a new strategy. When NHSX was set up in 2019 we moved back to a decentralised approach, with national oversight. So now central government sets the standards to improve levels of consistency in systems being built.
Clearly, we still have a long way to go in achieving a patient-centric data approach. Just by looking at the digital transformation report from the National Audit Office (NAO) published in May 2020, it reported that only 50 per cent of NHS staff felt they could rely on patient digital records as they were limited to only GP records, not information from other parts of the health and care system. Conversely, 50 per cent of NHS staff felt they couldn’t access or update patient information easily.
What measures will enable an improvement in its adoption?
To gain a complete view of a patient’s journey and derive any meaningful insights into patient data relies on interoperability between different systems. Currently healthcare professionals are restricted because they can only look at data within the confines of the systems they can gain access to.
While the NHS and the Department of Health and Social Care (DHSC) is starting to work towards piecing together the disparate systems and building standards so that technically they can talk to each other, getting patients on board with data sharing remains a constraint.
We must make sure we have the necessary controls and guarantees in place about how the data will be utilised if we want to win over patients’ trust. Assurances and even legislation need to be provided to gain patients’ confidence of its appropriate use. So their data won’t be made accessible to pharmaceutical companies or anyone who requests it, but only for their direct care at the point of clinical need.
Under COPI, the emergency legislation passed during the Covid pandemic, organisations were permitted to share patients’ data, for research purposes and the discovery of vital insights. Some of the data was allowed to be shared without the patient’s permission, but under very strict controls. COPI is a good example of clearly setting out what data can be shared and for what purpose, and how much good can be realised when taking this approach.
Only this month, the former health secretary signed off a fifth renewal of the extension of these COPI measures to allow GP surgeries to continue sharing patient’s data to help manage the response to the pandemic. Demonstrating the importance of data sharing to saving lives now and in the future.
What can the government do to address this?
The government needs to enforce open standards on all health and care systems. Steps have been taken towards this approach with the introduction of GP IT Futures, whereby NHS Digital is building central application programming interfaces (APIs) and working with GP system providers to open up their systems.
We need to see the same open standards approach with patient system providers for hospitals and trusts. The APIs act as a translator between different systems, so that other companies can integrate with and link into a patient management system. Clinicians would be able to look at patient data from different health and care providers, whether that’s from the local authority, primary or secondary care which will ultimately improve patient care.
Patient perception is the most important factor in achieving patient-centric data. The government needs to keep patients at the centre of design, engaging and seeking their opinion and making the case for why sharing their data is useful. Essentially taking a patient-centric approach to delivering patient-centric data.
By Hazel Jones, Head of Health at Made Tech