12 September 2016
Patient data, also commonly referred to as health information or health records, is crucial to enable researchers to prevent, diagnose and treat disease, as well as improving patient care.
- AMRC's position statement on the use of health information for medical research.
- AMRC’s response to the Department of Health’s consultation on the National Data Guardian for Health and Care’s review of data security, consent and opt-outs.
- AMRC's submission to the Science and Technology Committee (Commons) inquiry into the big data dilemma.
Quality and standards
- AMRC members require the researchers they fund to comply with UK law when handling patient data.
- The Health Research Authority requires all research projects involving NHS patients and their data to pass ethical review before they can go ahead.
- All research funded by AMRC members undergoes rigorous peer review ensuring that they only fund research of the highest quality.
Data and impact
- AMRC supports the work of Understanding Patient Data to provide the resources to hold better conversations around data.
- The Wellcome Trust Monitor Report found that 77 per cent of the public are willing to share their anonymised medical records for the purposes of medical research.
- The APPG on Medical Research, for which AMRC provides secretariat support, held a drop-in event in Parliament in July 2016 to demonstrate how patient data can transform the lives of patients.
- We have produced a booklet which uses case studies to bring to life some of the ways our members, and the researchers they fund, are using health information to save and improve lives.