Sharing your patient record can help researchers save and improve lives
The NHS is creating a new system to share information from patient records to improve care and research, while protecting each person's confidentiality. Everybody in England can choose how information from their patient record is shared in this new system.
As you make up your mind about sharing your records, more than 40 medical research charities and organisations have joined together to tell you more about how your information can be used for medical research and help you find out more about how your information will be kept safe.
Every time you visit an NHS hospital or your GP, 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.
Because your patient record contains personal information about your health, it must be handled very carefully and accessed safely and securely, protecting your confidentiality.
Information from your record can also be used to improve healthcare delivery for all patients, and by health researchers who use it to help them understand the causes of disease and to find better treatments.
NHS England has announced that it plans to delay the collection of data from GP surgeries until the autumn and that it will work with patients and professional groups to ensure information is accessible and reaches all sections of the community in order to build confidence in the initiative.
We understand this decision as we believe that, whilst sharing information from medical records is important for medical research and healthcare delivery, the systems for achieving this need to be trusted and understood by everyone. This delay should allow for fuller communications that ensure people are aware of how their data will be collected and used, the safeguards that are in place, and how to exercise their right to object.
- Academy of Medical Sciences
- Alzheimer's Research UK
- Alzheimer's Society
- Arthritis Research UK
- Association of Medical Research Charities
- Asthma UK
- Ataxia UK
- Breakthrough Breast Cancer
- Breast Cancer Campaign
- British Heart Foundation
- Cancer Research UK
- Chronic Granulomatous Disorder Society
- Cystic Fibrosis Trust
- Diabetes Research and Wellness Foundation
- Diabetes UK
- Fight for Sight
- Genetic Alliance UK
- Heart Research UK
- Institute of Cancer Research
- Kidney Research UK
- Leukaemia & Lymphoma Research
- Marie Curie Cancer Care
- Medical Research Council
- Meningitis Research Foundation
- Motor Neurone Disease Association
- Myeloma UK
- National Osteoporosis Society
- Ovarian Cancer Action
- Parkinson's UK
- Primary Immunodeficiency UK
- Prostate Cancer UK
- Roy Castle Lung Foundation
- Society for Endocrinology
- South West Thames Kidney Fund
- The Brain Tumor Charity
- The Urology Foundation
- Tuberous Sclerosis Association
- Wellbeing of women
- Wellcome Trust
- Yorkshire Cancer Research