How sharing your patient record can help save lives

by Rhiannon Smith
Senior Research Information Officer

Rhiannon Smith, Senior Research Information Officer

Every time you visit your GP or an NHS hospital, information about your health is recorded and stored in your patient record. The NHS uses this information to help provide the best clinical care for you.

All our patient records hold valuable information that could help improve treatment and care. That’s why the Association of Medical Research Charities (AMRC), which includes Marie Curie, is launching a campaign to raise awareness of the importance of sharing data from patient records with researchers.

The campaign coincides with upcoming changes to the way the NHS collects patient data. The NHS England will shortly be sending out leaflets to all 22 million households in England that explain changes in how data from people’s health records is collected from GP surgeries. Under the changes, researchers will be able to access anonymous data collected from health records.

However, patients will be given the right to object to their data being stored within a central repository and accessed by researchers.

The value of patient records

Patient records are an extremely valuable resource, allowing researchers to gain knowledge and experience to treat illness and combat disease. Marie Curie has funded several research projects which make use of existing patient data – and this research is vital in improving end of life care for patients, carers and families.

For example, Dr Steven Oliver at the University of York is leading a project on the care of patients with bowel and blood cancers at the end of life. This research depends on information from the National Cancer Data Repository and will help us to understand patterns of end of life care and how they can impact on the place where a person is cared for, and where they die.

We have also funded research by Dr Elizabeth Sampson on the characteristics and health of people who are living with someone who has cancer, chronic obstructive pulmonary disease or dementia.  This research relies on the UK health improvement network database which includes over 9 million patients. This research on the health and wellbeing of people who are caring for a dying person will allow us to better support and help carers.

The aim of the AMRC campaign is to make people aware of the choices they have and encourage them to allow researchers like Steven and Elizabeth to access to their anonymous health data and improve treatment and care for everyone,

Visit to find out more about the campaign. You can also download the campaign leaflet (PDF 96KB).