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Adult Social Care and Health Care Data Linkage Project

London Borough of Islington, the London School of Economics and NEL Commissioning Support Unit are collaborating in a study which aims to find ways to extract indicators of a person’s need from the information contained in their case notes.

Whereas case notes include a lot of invaluable information regarding the needs of care users and their carers, a lot of this evidence is handwritten and is therefore difficult to access rapidly or to summarise across a number of cases.

By finding better ways to extract and analyse this information, we aim to better provide services for you and understand how well existing services are working. This information can also be very useful for planning purposes, for instance when assessing changes through time in the nature of care needs of the population supported by the council.

Please see our privacy notice leaflet for further details.

How will my information be kept confidential?

The data that is used is ‘pseudonymised’, which means any identifying details (such as name or NHS number) is replaced with a unique code. No other patient identifiable data such as name or address is received for data linkage. The data that is linked includes data from hospitals (via a portal called the Secondary Uses System) and GP records (EMIS). This is a very important process without which we have very limited understanding of how health and social care is connected.

Whom else will have access to this information?

We work with an organisation called the North East London Commissioning Support Unit, who work on our behalf to securely manage and link these data. Such organisations are referred to as data processors.

These data are always stored securely and only shared with organisations that are working with us to help us plan and evaluate health and social care services. These organisations mainly include, but not limited to, the NHS and academic partners such as UCL and London School of Economics.

With any organisation we work we ensure that there is strict governance, security systems and procedures in place to protect your data.

How long will you keep my information?

We will only keep your information for as long as is required by law and to provide you with the necessary services in line with our stated retention policy. For further information, please see our Full Privacy Notice.

What if I do not want to have my information linked or shared?

For information on your right to opt-out of having your information shared for purposes beyond your individual care, please see our NHS National Data Opt-Out Privacy Notice.

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  2. Data protection: We will handle your personal information in line with the Data Protection Act 1998 and in accordance with the council’s Fair Processing Notice.