Published on: 17th August 2016
Case Study 8
Citizen Driven Health
Prof David Ford, Prof Ronan Lyons, Dr Gareth Noble, Dr Kerina Jones, Rod Middleton, Simon Ellwood-Thompson, Hazel Lockhart, Dr Jeffrey Peng, Katie Tuite-Dalton, Jemma Jones
The UK MS Register, funded by the MS Society, is the world’s first record, for any condition, to combine information provided by people with MS, with medical and NHS data.
Multiple Sclerosis (MS) is a chronic, inflammatory, autoimmune disease (a condition where the body’s immune system attacks and destroys healthy body tissue by mistake). There is a serious lack of facts about living with MS – this includes how many people have the disease and what form of MS they have. The cause of MS is unknown and currently there is no known cure. The disease has physical and mental effects and is extremely fatiguing. The overall burden of the disease is considerable on the individual, their family and the NHS.
The UK MS Register, funded by the MS Society, is the world’s first record, for any condition, to combine information provided by people with MS, with medical and NHS data; this data is then taken and fed into the SAIL Databank. The SAIL Databank removes the identities of all the people in the study (to protect their privacy) and allows the information to be studied by a team of researchers based at Swansea University. Some of this data is collected directly from people with MS via a purpose-built website. The MS Register website allows the researchers to gather information and ask questions on all aspects of MS. People that join are asked to regularly update the information on their treatments and the impact MS is having on their lives.
The Register is helping to record information on MS and build a clear picture of the true impact MS has on people’s lives in Wales.
Research findings from the Register have revealed that there are high levels of anxiety and depression among people with MS. This has led to a policy change for the MS Society, with new campaigns focusing on this previously neglected aspect of MS. The MS Society has gone on to fund further research which has shown that treatment and therapy can help people with MS and should be considered in healthcare planning.
The register is also having a positive impact for the 14,089 MS participants in the study, as feedback has indicted that they feel that this is the first piece of research that gives a view of their unique experiences of living with the disease. Through the Register, people with MS can be partners in their healthcare, providing the evidence needed to drive vital MS research and campaign for more support.
The MS Register now aims to expand to include additional hospitals and NHS treatment centres. Researchers at the Register are encouraging more people with MS to take part, so that they can gather even more information about life with MS. In the long-term, the MS Register can enable the development of new services that better meet the needs of people with MS. The knowledge gained from the Register can continue to fuel campaigns for fair, relevant policy and improved healthcare for people living with MS.
For more information on the MS Register please visit www.ukmsregister.org
Enquiries to Sarah Toomey, Communications Officer, Farr Institute CIPHER, firstname.lastname@example.org