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Realising the power of data

Nick Hirst, chief information officer at the National Institute for Health Research (NIHR) Clinical Research Network, outlines how his organisation is adapting and developing to reach the ambitious goal of saving lives through data.

As the digital revolution sweeps through organisations and the health sector seeks to find ways to benefit from a world of continually advancing digital capabilities, some organisations are starting to gain rich insights from data and analytics, which is allowing them to deliver real value for their stakeholders and constituents. What if we could do this for patients and the public, for researchers and clinicians and all healthcare workers, and do so whilst continuing to deliver our normal day-to-day business and services?

Imagine that getting an answer to a question is as easy as just asking the question. That data and information and insight derived from that data is readily available wherever and whenever required.

Imagine that information could be shared across all parts of the health sector with ease to support all aspects of care provision and health research. A world where research on research of the past, data mining and automated data mining and discovery is presenting new insights and complementing new and innovative areas of research.

Imagine that technology will advance to a point where the use of quantum computing and artificial intelligence (AI) are the norm and take healthcare and health-related research into new and wonderful directions, opening up new possibilities for prevention and cure.

Why just imagine?

Why not set off on that journey and prepare for the future? Over the next few years, most business intelligence (BI) tools and data analytics tools on the market will have AI and machine learning capabilities built into them. Quantum computing, which will revolutionise our ability to process information, is already in its early stages of enhancing data processing abilities and will mature enough over the next 10 years to totally revolutionise the way that information can be processed. Personal assistants and devices such as Amazon’s Alexa and Echo, Google Assistant and Apple’s Siri are enabling new kinds of interactions between humans and machines.

A number of public sector and enterprise organisations are looking to use these voice- and text-based interactions to improve the availability of information to citizens and employees, and reinvent the way services are delivered.

We are all becoming increasingly aware that the success of what we do hinges on our capability to capture, share, analyse and interpret data of all kinds, be that patient data, research data, operational data or data from sensors, medical devices and the internet of things. There is a real and valid expectation that advances in the ability to capture, store, process and interact with data will help deliver increased value, reduce risk, drive operational efficiency and, most importantly, deliver better patient outcomes and improved experiences for both healthcare workers and patients.

However, there are some big challenges facing the healthcare sector in trying to be part of this revolution: the sheer scale of healthcare, which has evolved over time, and the associated organisational and process complexity which has resulted. Some challenges arise from the legacy of the ICT and the different capabilities across the ‘ecosystem’ of this to support such a complex model.

The essential premise of the safety of patients in all interactions and in the processing of data whilst maintaining accuracy, quality, privacy and security is fundamental.

However, addressing these requirements over the years has created a legacy of organisational structures, governance mechanisms, ICT and process, which presents a web of complexity.

Hindsight to insight to foresight

It is into this reality that the NIHR is setting out on a journey to maximise the ‘power of data’ for all of our users. I truly believe that as this journey unfolds, we will one day experience a ‘game changer’ in our ability to support healthcare research and the consequential impact this will have on healthcare and the health of the nation.

The NIHR is the largest national clinical research funder in Europe. We fund health and care research and translate discoveries into practical products, treatments, devices and procedures, involving patients and the public in all our work. We also play a key role in investing in the research fabric of the nation to support research in health, public health and social care. We ensure the NHS is able to support research funded from other stakeholders to encourage broader investment in, and economic growth from, health research.

As the most integrated clinical research system in the world, we support thousands of clinical research studies each year. We drive research from ‘bench to bedside’ for the benefit of patients and the economy and to keep the nation at the forefront of international research.

What this means is that second only to people and patients, the lifeblood of our organisation is data. Our ability to perform and deliver research is founded on the quality and timeliness of the data we collect and on our ability to process that data into useful information. To become a truly data-driven organisation we need to increase the maturity of our data analytics and BI capabilities, improve our underlying technologies (operational systems and databases, data standards and IT infrastructure) and scale what we do with data capture and analytics. We have a simple goal: hindsight to insight to foresight. 

Stages to success

We are not alone as an organisation embarking on this journey; we need to maximise the power of data to support the work we do and to maximise the goals of the NIHR. However, as with every great expedition, there are several stages to reaching our goal.

One of the first stages has been to adopt a ‘cloud first’ approach to information systems and data storage. Many components of the NIHR are totally cloud-based, with all core operational systems and analytics solutions operated in the cloud with no on-premise datacentre. This has allowed us to scale our infrastructure to meet current and future demands. It has also increased systems availability, performance and access, whilst providing a level of resilience and a technology roadmap which we could not hope to achieve by managing a traditional on-premise datacentre. It is also secure. We take security seriously and work with our infrastructure providers and cloud services providers to ensure that security.

We are now addressing the maturity of our BI and data analytics capabilities. Clearly, the quality of any data analysis is reliant on the quality and availability of data. We are continuing to improve operational systems and increasing the level of integration and interoperability between all of the systems across our ecosystem. Availability of data in a timely manner is becoming a reality and our ambition is to be able to capture data in ‘real time.’ This might be when a patient comes into contact with a clinician or directly from the patient through a medical or wearable device.

There are, of course, bumps in the road on this journey. Access to patient data is often a challenge. Integration has consequences when an action by one person has a reaction elsewhere with little, if any, human involvement. Previously, ‘silos’ existed and there was manual intervention to check, validate and double-check the data which flowed across systems. This is becoming increasingly automated, validated at the point of entry and automatically shared.

Data maturity takes time

We have some way to go before data is only captured once at the ‘point of creation’ and shared with all who need to know. However, there is hope soon there will be one logical system of record and one version of each data point across the NIHR.

We have to remember that a BI programme includes people, skills, processes, metrics, technologies and other components.  As the BI programme matures, the architecture, along with the processes and skills needed to support it, will evolve.

We are starting to take a more strategic approach to BI and analytics. However, we cannot enact a strategic approach in one simple step. It takes time to build all the skills needed for the right BI and analytics programme.

At our most mature we envision more agility into our approaches, adopting advanced analytics and self-service BI capabilities. We will extend this to our ecosystem of partners and there will be greater use of external data.

We have only just started out on our journey to realise our dream of the power of data. We are actively working to improve our capabilities in this evolving and exciting area. We will learn from the challenges and celebrate the small successes, whilst not losing sight of the end goal: to use the power of data to save lives and improve the health and wealth of the nation.

FOR MORE INFORMATION
W: www.nihr.ac.uk