Why we must improve support for end of life patients through joined-up data sharing

The provision of palliative care for end of life patients is crucial for the patient and their carers, but also to help ease pressure on the health service. Improving access and choice to palliative care patients has recently been the subject of an amendment to the Health and Social Care Bill in a bid to end what was seen as a postcode lottery of care.

The amendment makes the provision of specialist palliative care a requirement across England and includes the need to provide appropriate systems to share information about the patient with everyone involved in their care. It also highlights the need for advance care planning which has shown to improve care and adherence to patient wishes while also reducing by half hospital bed days for adults approaching the end of their lives and reduce unplanned admissions by two fifths.

Telstra Health UK’s End of Life Care analysis study supports this approach and shows that when it comes to care planning better use of data and shared information between agencies can improve services and play a significant part in ensuring more targeted support for patients on an end of life pathway.

Mandatory routine data collection and sharing can help to improve care

The analysis was carried out using whole systems integrated care data sets from North West London CCG. The aim was to identify opportunities for service reconfiguration, ultimately resulting in the improvement in quality and safety of care, but also gaining an insight into how patients receiving palliative care make use of local health and social care services and comparing this to patient level outcomes.

The results showed a greater need for routine collection of data and sharing across the wider health system to better inform providers about end of life choices, including place of death. It was clear from the data analysis that there was disparity in whether patients died in their place of choice, dependent on complexity of illness and whether they are cared for in mainly community or primary care settings.

Mandatory data collection would enable GPs to begin a conversation with a patient about their wishes and to make an advanced care plan. It would also allow healthcare professionals to pick up on a patient’s condition, ensuring they can offer extra support when needed and avoid hospital admission. Repeat hospital admissions can be an indicator that a patient’s health is beginning to deteriorate and extra support needs to be put in place.

Risk stratification can determine which patients are deteriorating so they can be supported during their last 12 months of life. This data insight provides opportunities to offer advanced care planning that could otherwise be easily missed.

Simplifying the process to ensure that data can be uploaded into a single system rather than several different ones can ensure the information is accessible to everyone and inform services of where improvements can be made, as well as providing an audit trail showing how different healthcare systems are meeting patient choice when it comes to place of death.

Find out more about how care for end of life patients could be improved with better data collection and sharing by reading our report here