A new research project will investigate treatment and management options for rheumatoid arthritis (RA) by analyzing thousands of real-life experiences of RA-specific drugs.
“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,” Will Dixon, PhD, professor of digital epidemiology at the University of Manchester, said in a press release.
Launched in November, this research study is being led by a collaborative group of three organizations – the University of Manchester, HealthUnlocked, a social network for health, and the National Rheumatoid Arthritis Society (NRAS).
“We are excited to get the opportunity to work with NRAS and HealthUnlocked in order to analyze 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,” Dixon said.
The project will review and evaluate thousands of first-hand testimonies, reporting experiences from people who use RA-specific drugs daily, as well as their most-observed adverse effects, either from live interviews or from social media postings.
It is hoped the research will help increase the understanding of potentially harmful effects of drugs prescribed by doctors on a routine basis. The study also will seek to design new drug safety profiles, by improving the understanding of the occurrence and impact of adverse drug reactions (ADR), and to understand better in which context these effects tend to happen.
“We will start by examining the safety of glucocorticoid, or steroid therapy, a drug that has been used for over 65 years and is still used in half of patients with RA. In addition to looking at the occurrence of a range of known side-effects, we are interested in examining the impact of these side-effects on patients’ lives. We know, for example, that weight gain and insomnia are of top importance to patients,” said Dixon.
There are an estimated 690,000 people the U.K. living with RA, so the results of this study may be big news for people living with an autoimmune disease.
HealthUnlocked will be responsible for collecting the data directly through their web platform. The University of Manchester will be in charge of collecting data and information on side effects, to be extracted and aggregated anonymously so they can be processed.
NRAS will take charge of sourcing information through its dedicated RA support forum on HealthUnlocked’s social network, which has more than 13,000 members and more than 18,000 posts.
The collaborative team is hopeful the combined data and information are enough to provide accurate accounts of what people with RA experience and the challenges they must overcome every day.
“This is a brand new way of studying a disease, starting from the patient’s perspective. 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,” said Matt Jameson Evans, MD, HealthUnlocked’s chief medical officer.
“Conversations within social media do not conform to usual routine trials — their discussions rarely use medical terms or concepts to describe their health conditions, and conversations are with peers, which can be dramatically different from those they have with clinicians or researchers. We will be fascinated to see how this data corresponds to existing medical knowledge about rheumatoid arthritis,” Evans concluded.
