There are a great number of organisations that use the data, including public sector bodies, charities & commercial organisations. To use the information, they must:
A release register is also maintained to provide and show what data has been provided and how it has been used. From the most recent COVID-19 pandemic along with many other uses that support health and social care. Including the development of new services, improving performance & creating new treatments.
Data has been used to identify health inequalities in specific social and ethnic groups. This helps ensure that the health challenges facing those that are most disadvantaged are responded to and do go unnoticed or untreated.
Using “de-identified hospitals admissions data” in conjunction with cancer data to get a clearer understanding of the difference to individuals’ and the variations in access to care. Which has meant a delay in their diagnosis and treatment giving rise to poorer patient outcomes. The availability and analysis of such outcomes has enabled changes to be brought about meaning that services, diagnosis, and treatment are more closely matched. Those that have been disadvantaged in the past are now able to be identified at an earlier stage, and receive the treatment they need to have a better quality of life.
Having access to the right patient data has been crucial for developing COVID-19 data. By identifying which of the many variations in treatment are the most effective in the recovery of individuals affected. One of the most effective treatments was dexamethasone which manged to reduce the deaths of those treated by it, by one third with over a million lives being saved worldwide.
It is important that the public can see that any data shared, is done so properly in order that trust and confidence can be built. The NHS Digital commission audits to check that the data is managed and used appropriately. Where audits identify problems a range of actions can be taken including suspending or stopping data sharing. All audit and post-audit reports are published to ensure that the public can have full visibility.
It is important that patients who would rather opt out of sharing their data for planning and research purposes still have the right to do so. It is the aim of NHS Digital to continue to improve transparency through the Data Release Register and they will be looking to improve the service based on feedback from users.
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