Why was this work needed?
Rheumatoid arthritis (RA) is an autoimmune, systemic condition in which the immune system attacks tissue in the joints, causing inflammation, stiffness, pain and extreme fatigue. It affects around 690,000 people in the UK. People with this condition are prescribed a range of different treatments and it is important for researchers and doctors to learn more about how people experience these treatments and their side effects.
What is happening?
This research will use software to analyse the real life experience of people living with RA by looking at conversations, engagement and discussions happening about their conditions on the social network for patients, HealthUnlocked. This will allow researchers to see how drugs are used and the side effects that come with them.
What are the benefits likely to be?
This work can provide insights into the potential harm from prescribed drugs and the impact that these medications have on people’s lives, with the potential to improve drug safety, as well as allowing insights into the real world benefits. It will also allow a better understanding of patient experience and the outcomes that matter most to them. By using a person’s own account of their experiences in this way, this kind of research can see the real world impact of treatments, rather than just relying on clinical trial data which is generated in a much more artificial environment.
What type of data is involved?
The data will be extracted from the RA community run by the National Rheumatoid Arthritis Society on the HealthUnlocked network. The online community has over 13,000 members and the posts within it provide accounts of real people’s experience of living with this condition.
What is the legal basis for accessing the data?
Data was de-personalised at source before being sent to the University. Within the forum, users were informed about the study, with the purpose of the study and the anticipated benefits being described. Users were also reminded that the Terms and Conditions of HealthUnlocked allowed the sharing of de-personalised data, although it was made clear that people could opt out of this by changing their sharing settings by following a link provided to them.
Who is funding and collaborating on this work?
The study is being run by the Arthritis Research UK Centre for Epidemiology and the School of Computer Science at the University of Manchester with the support of the social network HealthUnlocked and the National Rheumatoid Arthritis Society (NRAS).
Where can I go for more information?
- Page updated: 31 August 2017
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