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For more information, go to www.arthritisresearchuk.org

Sharing your patient record

An external linking picture to a site on patient records. It has a small boy saying you could save his life

Changes are being made to the way that the NHS stores patient information to improve care and research, while protecting each person's confidentiality. As a result NHS England are sending a leaflet about what this means to every household in England Better information means better care leaflet (PDF 2.15MB) during January.

Every time you visit an NHS hospital or your GP, information about your health is added to your patient record which is used to help provide the best clinical care for you and all patients. Researchers can also use it to help them understand the causes of disease and to investigate improved treatments. Your record contains personal information, and so it must be handled securely to protect your confidentiality.

Arthritis Research UK is joining up with other leading medical research organisations explain how the use of patient data can help to save and improve lives. Researchers can use health data to understand treatments and improve the quality of care for people with arthritis.

Alan Silman, Medical Director, 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.”

For more information please visit  patientrecords.org.uk or the NHS Choices website at: www.nhs.uk/caredata

Terry Lawrence, NHS patient living with osteoarthritis

Terry LawrenceTerry (left) has had severe osteoarthritis since her 50s and has had four joint replacements – her shoulders, left hip and left knee. She is having cortisone injections in her right knee which will need replacing soon. The progress of the disease is slow and degenerative and she has good days and bad days, like most people with osteoarthritis.

Terry said “As someone with a background in research that also has osteoarthritis, I understand the very pressing need to ensure that secure, anonymised data is available to researchers.  The bigger the sample of data available the better, and access to primary care data will enable researchers to push the barriers, identifying conditions earlier and developing better treatments. Medical progress is contingent upon ground breaking research"

Professor Peter Croft, Professor of Primary Care Epidemiology at the Arthritis Research UK Primary Care Centre

Access to health data helps to understand and drive improved patient care for people with arthritis and other musculoskeletal conditions.

Many of the 8.75million people in the UK who have sought treatment for osteoarthritis use non-steroidal anti-inflammatory drugs (NSAIDs) to ease their pain. In some groups, for example older people and those that suffer from stomach ulcers, there is a risk of serious side effects. This risk has been kept to a minimum as a direct result of research which involved secure and approved access to patient data drawn from their medical records. The way that NSAIDs are now prescribed has been improved because of research that was only possible using the large number of records and full range of people treated in general practice.

Professor Peter CroftProfessor Peter Croft, Professor of Primary Care Epidemiology at the Arthritis Research UK Primary Care Centre at Keele University (left) said “Access to patient data enabled researchers at our Centre to find out that patients with rheumatoid arthritis were no more likely to be screened for heart disease than those without the condition, despite being at increased risk. These research findings are being used to drive better practice so that in future fewer people will have heart disease that goes undiagnosed.

“ It is important that patients feel comfortable with the use of their records and that safeguards are in place to ensure that the records are used securely and responsibly. But the potential benefits are huge. Having access to an increased amount of data from the real world of everyday healthcare will enable us to ensure people get the best treatment and care in the future, and will help us to assist them in living more active lives”.

New campaign highlights importance of patient records for medical research

Dr Liam O’Toole, chief executive of Arthritis Research UK

Leading medical research organisations have launched an advertising campaign to raise awareness of the importance of sharing patient data with researchers.

For more information, go to www.arthritisresearchuk.org.
Arthritis Research UK fund research into the cause, treatment and cure of arthritis. You can support Arthritis Research UK by volunteering, donating or visiting our shops.