Patient stories highlight support for health data-sharing

Group CHC Hub

Posted on the 9th November 2016

Health data is at the heart of Connected Health Cities.

Health data is the information that is collected by health professionals during your care.  When this data has personal information like your name and address removed, it can be used to help develop better treatments or make services more efficient for patients.  By removing the information that allows a patient to be identified, the data becomes de-identified.

De-identified data can be analysed by health data scientists, like those working at CHCs, to understand more about large groups of patients (called populations).  When looked at as a whole, this information can be used for many purposes.  For example, it can allow researchers to see how patients move between different health providers, compare how effective one treatment is against another or identify inequalities in the way that health and social care services are delivered.

The regional teams at CHCs work with patients and the general public to understand more about the views regarding the use of their health data.  They do this so that the work taking place at CHCs is relevant to the way that patients access and use services.  Patient involvement also provides an opportunity for the public to let the CHCs team know what they think is an acceptable use of their health information.

These uses of data by CHCs could be part of health data research using de-identified data, or it could be part of initiatives to use the data to improve direct care.  Improving an individual’s direct care, rather than improving their care pathway, means that researchers would need to use identifiable data, which includes information such as name and address.  If the CHCs need to use any identifiable data, patient consent would have to be given.

As part of the CHCs’ interest in understanding more about public opinion, representatives from across the northern regions have been out and invited patients to share their personal thoughts about how health data could be used to improve their lives.  These thoughts have been recorded in the form of patient stories and can be accessed here.

The aim of these patient stories is to highlight public support for the increased use of data in different ways.  They highlight the personal opinions and experiences of patients with long-term conditions and who have experience of using multiple health services to receive treatment.

By documenting some patient experiences with regard to data sharing and data linkage, we hope to provide a platform for members of the public that feel strongly about data-led health improvements.

For further information about specific care projects please click here or join the conversation online by searching #datasaveslives.


For media enquiries please contact Nina Hayes-Thompson, Communications Officer, Connected Health Cities Hub.  Tel: 0161 306 4325 Email:

For more information please visit

Read the patient stories by clicking the links below

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