Member of the Public
Research is an important part of NHS activities in the UK. To most of us research means people in labs or doctors doing trials to test drugs, but there’s a whole lot more to health research than that.
Health research benefits everyone whether they’re perfectly well, or have been ill for a long time. It helps doctors find out what causes ill-health and develop new medicines and healthcare, which can be used right from the start of an illness. Research also helps identify practices and medicines that prevent us getting ill.
The records of your health, lifestyle and health habits (your data) already make a huge contribution to research, just by providing statistics about illness in the UK. The UK is the only country in the world where data has been recorded, since the 1940s, for every person registered with the health service – from birth to death. This means there’s a huge amount of data that researchers can learn from to help save lives.
CPRD is the new e-health secure research service whose task is to improve and safeguard public health by using anonymised data to conduct different types of health research including:
Observational research studies are studies that look at the records of large numbers of people to see if there are any links between things like diet, or family history, and particular illnesses. They help answer questions about what causes illness and how to treat and prevent it.
Clinical trials are research studies involving people. They test whether treatments are safe and how well they work. They may test new medicines, combinations of existing treatments, or whether giving a treatment in a different way makes it more effective or reduces side effects. Some trials are designed to find better ways to prevent or diagnose disease or to deliver health services.
Important statement about data confidentiality:
“CPRD Researchers never* get access to names, addresses, post codes or dates of birth. They also work under strict rules covered by legal agreements about what they can do with the data and what they must never do. CPRD is based around a service that has been operating for many years and we can state we are not aware of any breaches of our security policy.„
*There are studies undertaken where patients give consent that some forms of identifiers can be accessed.
CPRD operates under a whole range of UK and European Laws as well as NHS and other guidelines. These, taken together, form a complete, well documented and governed process from the NHS clinical data to the desk of a researcher. Some research projects use data from a single source others use data from multiple sources, linked by a Trusted Third Party in an approved manner. Not only does CPRD work with anonymised data it has in place the following: Charters, Privacy Enhancing Technologies, Physical Security Measures, Legal Arrangements, Contracts of Employment, Standard Operating Procedures and Rights of Audit. All our work is subject to both ongoing and annual reviews. See CPRD Governance for more details.
Even though it is allowed under law for us to have access to anonymised data we offer patients the right to opt out from the use of their anonymised data. GP practices that are part of the CPRD data system can mark your data as, not to be used, even in an anonymised form, for CPRD research projects. Over the last 7 years we are aware that very, very few patients decide not to let their anonymised data be used for what are very important public health reasons- improved, effective and safe treatments.
Patient and Public Involvement (PPI)
CPRD runs, in conjunction with the MHRA, a PPI programme that helps us gain the most benefit from patients about what research they would like to see, how research can best be undertaken and ways researchers should work with patients in research projects. Many committees that oversee the work of CPRD- ethics, NIGB and scientific approval (ISAC) also have lay members.