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How Data Sharing Gave COVID-19 Patients the Chance to Pass in Peace


As the COVID-19 pandemic progressed, dying patients’ family members found themselves in an impossible situation: they didn’t know how their loved ones wanted to pass away. Without that information, healthcare providers had little power to enact appropriate end-of-life care plans. And patients whose lives were already cut short by a painful disease suffered the consequences.

If only a service available in London were offered nationally and internationally.

For the past decade, London’s residents have benefited from Coordinate My Care, the National Health Service’s (NHS) integrated care plan system, which uses seamless data exchange to ensure healthcare providers meet each patient’s urgent and end-of-life care wishes. As COVID-19 caused more than 6,000 deaths in London, Coordinate My Care enabled the city’s elderly and ill to communicate their choice of care and even place of death, often keeping non-COVID patients out of the hospital. The service offered a degree of control at a time when uncertainty ruled.

“The relatives feel as if they participated in high-quality end-of-life care, so they are not so angry and grief-stricken that their loved ones have suddenly died of COVID,” says Julia Riley, a consultant in palliative medicine and clinical lead for Coordinate My Care. “And this protected the elderly, frail, and vulnerable by getting them the appropriate care.”

In the year preceding COVID-19, Coordinate My Care enabled the creation of roughly 2,079 care plans per month. The monthly total soared to 10,217  this past April, with more than 20,100 plans built in the first three months of spring. Healthcare providers, mostly ambulance services, accessed Coordinate My Care plans nearly 21,000 times this spring. The service now protects the wishes of more than 64,000 living patients in London, which aligns with the number of vulnerable patients expected to die within the next year, a landmark achievement for Coordinate My Care.

The result: more patients created end-of-life plans, and more clinicians used the insights to drive decision-making. Even amid the pandemic, no more than 21% of patients died in the hospital, a more than 25% reduction from the U.K. national average.

So how does Coordinate My Care work? Patients work with clinicians to document their wishes, preferences and medical details on the digital CMC care plan, which then uses InterSystems HealthShare® to electronically govern and transfer the data to stakeholders. They can then use the information to serve patients’ needs, most often during urgent care situations. The service is especially useful for care homes that serve the elderly.

“The inexpensive option of planning care is not exciting, but it actually delivers,” Riley says. “I think now it’s fair to say that Coordinate My Care has been fully embraced and embedded by London’s primary care providers.”

This story originally appeared the October 16, 2020 – HealthShare Connections News Flash No.4: COVID-19 Pandemic newsletter

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