A study launching this month in Manchester will use software to analyse thousands of real-life use of rheumatoid arthritis drugs, with researchers reviewing first-hand experiences of side-effects from thousands of people living with the condition through conversations, engagement and discussions on social media channels.
The project is a collaboration between the social network HealthUnlocked, the UK National Rheumatoid Arthritis Society (NRAS) and Manchester University.
The team behind the project say it will provide helpful insights about potential harms of drugs prescribed by doctors every day and seek to better understand the occurrence and impact of adverse drug reactions.
With around 690,000 people affected by rheumatoid arthritis in the UK alone, this is potentially big news for people with the autoimmune disease, the consortium said.
The data will be collected directly from within the HealthUnlocked web platform. Data and information on side effects will be extracted into an anonymous and aggregated form for analysis by researchers at the university.
The information will be sourced from a dedicated rheumatoid arthritis support forum, run by NRAS on the HealthUnlocked web platform, which hosts more than 13,000 members and over 18,000 posts. This provides accurate accounts of what people with the condition are going through and their experiences and reactions to drugs.
Will Dixon, professor of Digital Epidemiology and a consultant rheumatologist at Salford Royal Hospital said the project is an opportunity to dig into patients’ real experiences.
“When studying drug safety, it is common to focus on side-effects that doctors consider important, or on newer drugs, whilst forgetting the more established treatments,” he said.
The team will start by examining the safety of glucocorticoid, a steroid therapy that has been used for over 65 years, and is still used in half of patients. In addition to looking at the occurrence of a range of known side-effects, researchers are interested in examining their impact on patients’ lives.
“We know, for example, that weight gain and insomnia are of top importance to patients,” Dixon said. “By studying real-world experiences and stories, we can start to understand both the frequency and the nature of drug benefits and side-effects – and what matters to patients.”
Hearing patient voices
Matt Jameson Evans, Chief Medical Officer at HealthUnlocked, said the project would take a patient-centred approach to studying health outcomes. “This is a brand-new way of studying a disease, starting from the patient’s perspective,” he said. “By looking at patterns in experiences of people with a condition or disease within a social network, we can access and understand a large mass of data showing what is happening to real people every day.”
By using peer-to-peer conversations on social networks, the project promises to unlock insights that may be missed in conventional clinical trials. It could help to bring patient voices into the conversation about health outcomes.
“We are very interested to see how using real patient data in this way helps researchers to understand what really matters to people with rheumatoid arthritis in relation to side effects and impact of taking specific medications, as opposed to using clinical outcome data where the outcome tool has been designed by health professionals,” said Ailsa Bosworth, CEO of NRAS.
“We would like to see more patient-defined outcomes starting to be used and this research is exactly what could help that to become a reality.”