21 June 2013
Patient records are a valuable resource for health research. Access to the data in these records helps researchers better understand disease and develop treatments that can save lives.
- AMRC members support our statement on the use of patient data for research. We recently consulted on this and a revised statement will be published shortly.
- European data protection legislation is being updated. Any changes will impact on UK researchers accessing patient data. We are engaging with the developing legislation. We supported a joint statement voicing our concern over proposed changes to the Regulation which would have a negative impact on research.
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
- We know that people are broadly supportive of their data being accessed for research. The Wellcome Trust Monitor survey in 2009 found that 74 per cent were willing to allow access to their personal medical records for medical research.
- Our Ipsos MORI poll of nearly 1000 adults in 2011 found that 80 per cent would like their doctor to offer them the opportunity to allow a researcher confidential access to their medical records with no other involvement from them.
- Access to data about people’s health helps researchers find the most effective ways to care for them and better understand the causes and frequency of conditions. The APPG on Medical Research invited researchers to talk about how they are using patient data to improve health.
- As a member of the UK Clinical Research Collaboration we developed a leaflet for patients to find out about how their health records save lives - Your health records save lives - What? How? Why?