A new campaign has highlighted the importance of patient records for medical research.
The campaign coincides with a leaflet drop by NHS England to all 22 million households in England throughout January to explain changes in how data from our health records is collected from GP surgeries.
The leading medical research organisations say that the public’s medical records hold valuable information that could help save and improve lives. Allowing researchers access to the information contained within patient records would contribute towards understanding the causes of disease, developing new and better medicines and identifying new outbreaks of infection.
Under the changes, researchers in academia and the pharmaceutical industry will be able to access non-identifiable data collected from health records. Patients will be given the right to object to their data being stored within a central repository and accessed by researchers. Patient records are an extremely valuable resource for research. The information contained within them can be used to understand the causes of disease or to detect outbreaks of infectious diseases. It can help monitoring the safety and efficacy of drugs and identify potential participants to take part in a clinical trial.
The information can also be used to study the effectiveness of treatments and interventions in situations where it is not possible to conduct a clinical trial, for example monitoring the safety of taking prescription medication during pregnancy. The increasing use of electronic records opens up possibilities to ask new research questions by combining data from very large numbers of patients, and by linking different datasets. Research using primary care datasets has informed prescribing practice for non-steroidal anti-inflammatory drugs (NSAIDs) which are used by millions people living with osteoarthritis.
Liam O Toole, chief executive of Arthritis Research UK said: "Health data can help us understand and improve the quality of care for millions of people who are living with the agonising pain and disability caused by arthritis. Research driven by health records can help us all understand which treatments work best for people with arthritis and drive improvements in patient care."
Alan Silman, medical director of Arthritis Research UK said: “We need to understand much more about which treatments work best for which people with arthritis. Being able to use the collective experience gathered via routine records from very large numbers of patients is essential so we can plan the best care for this group of long term conditions that cause so much pain and disability.
“Arthritis and musculoskeletal health are particularly data poor areas. It is important that when new initiatives are being introduced, such as the ‘care.data’ programme, information on disorders as frequent and as impactful on people’s lives as arthritis must be included.”
Jeremy Farrar, director of the Wellcome Trust, added: “The NHS is a unique and incredibly valuable resource for research, providing insights that just would not be possible without such large and comprehensive sets of data. With the correct and necessary safeguards in place to assure public confidence, our patient records will provide a rich source of important data that can help researchers develop much needed treatments and interventions that can improve and even save people's lives."