How Europe’s largest patient data record can improve care

A new system for sharing health information has the potential to change how healthcare and services are delivered to patients, say experts at Imperial College London. In this article, Mr Erik Mayer, clinical senior lecturer at Imperial College London and consultant surgeon and transformation chief clinical information officer at Imperial College Healthcare NHS Trust, describes how Europe’s largest shared patient record can benefit researchers and patients

This is an edited version of an article that appeared on the Imperial College London website. The content is taken from a special collaborative workshop that took place at the college’s South Kensington Campus.

The Whole Systems Integrated Care (WSIC) Dashboards and Care Information Exchange Sharing system are a suite of digital tools available to clinicians and other health professionals who are providing direct care to over 2.4 million patients in north-west London.  It provides secure real-time information on how patients are accessing and using services such as GPs, A&E visits and community programmes.  The aim is to reduce duplication of information and to support clinical staff in improving effectiveness, safety and experience of care for patients. Imperial Healthcare NHS Trust will move a more comprehensive version of their patient records into the WSIC dashboard system over the next year.

Describing the need for the system, Erik Mayer said: “One of the barriers to delivering high quality and safe care is that a particular patient’s care records can’t be accessed reliably by all necessary healthcare professionals working across different settings. There is a real need for a comprehensive shared care record that healthcare providers and patients can access in order to deliver better planning and more personal involvement of patients in their care. The WSIC dashboard is an exemplar of a shared patient record that has helped us shape how we better deliver and involve patients in their care, across existing settings of care, so we can improve their health. I hope delegates at the workshop were inspired by how we are using the WSIC dashboards; we would encourage them to access the information to see how it can benefit patients.”

One of the barriers to delivering high quality and safe care is that a particular patient’s care records can’t be accessed reliably by all necessary healthcare professionals working across different settings.

All health and adult social care organisations have a duty of care to share information with each other about patients they are caring for directly, to improve the care provided. Information about healthcare helps the NHS to improve individual care, speed up diagnosis, plan local services and research new treatments.

However, different organisations store data in separate technology systems, which are often not joined up; this means that healthcare professionals can’t access information stored in separate systems such as hospital/GP records to get a full picture of a patient’s health and well-being.

The WSIC Dashboards provides a summary of patients’ health and social care which is hosted centrally and can be securely accessed by different NHS systems. Healthcare staff can use the system to case find and manage patients who require more targeted and proactive care. They can also use the de-identified data for agreed healthcare research purposes.

Understanding how frailty affects people’s outcomes

Dr Alex Bottle, reader in medical statistics at the college, outlined at the workshop how he has been using WISIC to learn more about frailty in patients with heart failure, and how often they access social care and community services, in order to identify the most at-risk patients. The majority of patients with heart failure in north-west London are frail and frailty is associated with frequent hospital admissions and a poor quality of life and prognosis.

Dr Bottle and his team have analysed data such as hospital and GP visits of more than 16,000 patients with heart failure between 2014 and 2018. They then used a mathematical tool called the electronic Frailty Index (eFI) to measure frailty in north-west London patients and, via another database, compared it with patients nationally. They found that half of patients in north-west London are moderately or severely frail, compared with just 15% in the rest of the country. They also found that these patients had multiple conditions such as high blood pressure, atrial fibrillation and diabetes.

The researchers believe that this data can be used to help clinicians identify patients who are most at risk of serious health complications as a result of their heart failure and work with them on their care and treatment plans. They also believe that this data can be used to learn more about which services people are using and why some people don’t seem to be accessing the services they need. This will help plan investment in services such as community nursing in areas where it is needed in order to improve quality of care.

“Heart failure is a common yet sometimes unrecognised condition,” Dr Bottle said. “Many patients are frail, which can lead to poor outcomes such as emergency hospital admissions and reduced quality of life. However, before WSIC, there wasn’t the necessary dataset available to healthcare staff in primary and secondary care to track patients across sectors to see where we need to invest resources. The WSIC database has helped us get a much fuller picture of the service use, health and wellbeing of heart failure patients in north-west London. This could help clinicians identify patients who need early intervention and close monitoring, and to work with patients to plan a more tailored care plan.”

Helping people with chronic diseases

Erik Mayer and his team have used WSIC data to learn more about how patients with chronic diseases are accessing community, primary and secondary care health services to manage their care. Chronic diseases, such as diabetes, are conditions that patients live with over the long term and these affect around 15 million people in the UK. Chronic diseases can be difficult for patients to manage, and challenging for healthcare systems; almost two thirds of the NHS budget is spent treating chronic conditions.  Effective management of chronic diseases can result in better outcomes for patients and less financial burden on healthcare systems.

Mr Mayer and his team analysed information, such as the Patient Activation Measure questionnaires of almost 20,000 patients, to learn more about how often they visited their local GPs for check-ups, telephone appointments and community nursing services.

The team found that patients who are engaged in their care, and use the health services available to them, had better health outcomes and were less likely to be referred to hospitals due to complications. However, less engaged patients were more likely to see their disease escalate and, as a result, would require more interventions and hospital admissions.

Patients who are engaged in their care, and use the health services available to them, had better health outcomes and were less likely to be referred to hospitals due to complications.

The team suggests that the results show that resources and services need to be set up differently in order to meet the needs and expectations of patients. For example, some patients prefer telephone appointments for general advice on their condition rather than face-to-face interactions with a GP an, in areas where the use of this service is high, more investment should be allocated to make it more widely available.  The team also believe that in areas where patient engagement is low, proactive interventions are needed to raise awareness of services and further support to help patients manage their conditions.

Outlining the importance of finding new and better ways to treat long-term conditions, Erik Mayer said: “People with chronic diseases often have the greatest healthcare needs of the population and their treatment and care absorbs almost 70 per cent of healthcare budgets. There is a real need to find better ways to work in partnership with patients to support those engaged in their care to feel empowered to manage their conditions while, at the same time, making sure we do not create a division of inequality. Ultimately, this will lead to better health outcomes and reduce the financial burden placed on the NHS.

“Having access to WSIC data has given us a detailed, and a more complete, picture of the health of patients and allowed us to identify areas where improvements need to be made so that we can prevent patients’ conditions from escalating further.”

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