This blog post is based on the first morning session, covering shared care records, from the recent Graphnet National User Group, held on 29th April.  The session featured insights from Markus Bolton, Director at Graphnet, and Joe Rafferty, former Senior Responsible Officer (SRO) for the CIPHA programme and now Chair of The Christie NHS Foundation Trust. Together, they outlined the CIPHA programme’s goals, milestones, and its role in transforming healthcare through data integration.

The Birth of the CIPHA Programme

The CIPHA programme was born out of the necessity to bring together disparate healthcare data systems, streamline access, and enhance decision-making in real-time. Launched in response to the challenges posed by COVID-19, the programme aims to transform how health and social care systems operate, making them more responsive and preventive.

Joe Rafferty, who was pivotal in leading the CIPHA programme as its former SRO, played a key role in initiating this data-driven transformation. Reflecting on his experiences, he shared how he realised the importance of integrated data during the pandemic. He pointed out that the inability to access comprehensive, real-time data on patient needs was a glaring issue, particularly as the system faced a surge in cases. This highlighted the critical need for integrated health data systems that could provide actionable insights into care pathways and patient outcomes. As he explained:

"I asked the question, where are all the sick patients? And the only thing I could get was data on patients who'd been admitted to hospital... it was a real live example of how we've got mountains and mountains of data that is disconnected in so many ways."

Connecting Health and Social Care: A Data Revolution

The primary focus of CIPHA is to integrate health and social care data to create a unified, easily accessible record that spans across various care communities. As Markus explained:

"One of the key objectives of the CIPHA programme is to build a digital health record system that is integrated across the care community."

This digital health record will allow health and social care providers to share workflows, enhance patient care, and improve decision-making at every level of the system. By enabling the seamless sharing of data, the programme aims to break down traditional silos that have plagued the NHS for years.

Markus also emphasised the transformative power of this integration, saying:

"It's not just about collecting data - it's about transforming that data into something actionable, that can be used to make more informed decisions, improve care outcomes, and prevent avoidable health issues."

The Importance of Data-Driven Population Health Management

A core element of CIPHA’s work is its focus on population health management (PHM). The shift from reactive to proactive care is vital in addressing the growing pressures on the NHS, especially in light of an ageing population and increasing chronic disease burdens. By analysing vast amounts of healthcare data, CIPHA aims to identify trends, predict patient needs, and intervene earlier to prevent deterioration in health.

Joe elaborated on the importance of integrating data to improve healthcare outcomes:

"We need to invest in integrated care and get the benefits from integrated care. But we’ve got to start by integrating our data in a way that gives us new insights into how the system behaves."

By linking various data sets, such as GP records, hospital admissions, and social care data, CIPHA allows clinicians to understand not just the medical history of a patient but also the social determinants of health that play a crucial role in overall well-being. This holistic approach is key to creating a more sustainable healthcare system.

Key Milestones and Achievements

One of the most significant achievements of the CIPHA programme is the establishment of a federated platform that allows for data to be shared securely across 11 Integrated Care Systems (ICS) in the UK. With over 17 million citizens covered, this platform is transforming how data is used in real-time care delivery. Markus highlighted that the integration of data across these regions has already resulted in significant improvements in healthcare delivery.

For example, Frimley Health and Care Integrated Care System has used the platform to identify patients suitable for remote monitoring. As a result, 6,000 complex need primary care patients and 900 care home residents are being looked after in the comfort of their own homes. This has led to a 40% reduction in hospital admissions for high need patients and 34% for care home residents.

The Cheshire & Merseyside Integrated Health and Care Partnership used the population health data to identify more than 1,300 people who are at risk of developing serious health issues due to fuel poverty. This has allowed them to stratify their fuel-poor population using risk of admission, mortality risk and other factors such as living alone, allowing support to be delivered where it’s needed most.

The success of the CIPHA programme in these regions is a testament to the power of integrated data systems. The programme is now poised to expand further, with plans to integrate even more healthcare and social care data sets to improve care delivery.

Moving Beyond Technical Solutions: The Leadership Shift

While the technical infrastructure of CIPHA is undoubtedly impressive, Joe stressed that the real transformation will come from a shift in leadership and a change in how healthcare providers think about using data. He pointed out that while many areas of the NHS have been bogged down by technical challenges and a tendency to start projects from scratch, CIPHA has focused on leveraging existing systems and building upon them for greater efficiency.

"We’ve got really deep, applicable, reliable experience in the CIPHA programme... we need to build on what we have."

The programme is also tackling the issue of "allocative efficiency," a concept that is central to the long-term sustainability of the NHS. By ensuring that resources are allocated effectively, the CIPHA programme is striving to maximise the impact of every pound spent on healthcare. Joe has been vocal about the need for a more strategic approach to commissioning, one that uses data to identify the best areas for investment and improvement.

A National Model for Integrated Care

The CIPHA programme is now seen as a model for building integrated care systems across the country. As Markus explained, the programme is not just about connecting data; it's about creating a system that is capable of continuous learning and improvement.

"We’re not reinventing the wheel... We’re building on what’s already been done, learning from the successes, and applying those lessons nationwide."

One of the most exciting aspects of CIPHA is its potential to scale and impact the entire NHS. The lessons learned in various regions are now being applied to other areas of the country, with the programme serving as a template for future initiatives. As Joe highlights:

"The key now is to ensure that these lessons are applied across all ICSs, creating a truly integrated national system of care."

Looking Ahead: The Future of CIPHA 

The future of CIPHA is focused on continuing to refine and expand the digital health record system while ensuring that it remains aligned with the broader goals of the NHS’s 10-year plan. Joe and Markus both recognise the importance of continuous engagement with NHS England to ensure that CIPHA's successes are built upon and that the programme continues to evolve in response to emerging challenges.

CIPHA is also looking at ways to integrate new technologies, such as AI and genomics, into its framework. As Markus notes, the next phase of the programme will focus on increasing the use of AI to predict patient needs and improve care pathways. By using AI to analyse vast amounts of healthcare data, CIPHA aims to further enhance decision-making and make healthcare delivery even more proactive.

Conclusion: Transforming Healthcare with Data

The CIPHA programme is transforming how the NHS uses data to deliver care. By breaking down silos, integrating health and social care data, and focusing on population health management, CIPHA is paving the way for a more efficient, preventative, and sustainable healthcare system. 

As the programme expands and matures, it will continue to be a model for how data can be harnessed to improve care and reduce inefficiencies, not just within the NHS, but across healthcare systems globally. The vision is clear: data is the key to the future of healthcare, and CIPHA is at the forefront of making that future a reality.