Going Viral in Rheumatology – using social media to assess what patients with rare diseases think is important in medical research

In the Public Engagement Unit we often come across researchers developing new ways of having conversations with public and patient groups. I had a fantastic meeting with Dr Thomas McDonnell and Dr Chris Wincup in the UCL Department of Rheumatology, about their work using social media to speak with patients. Thomas and Chris talk about their experience here and the insights they’ve gained from using social media to spark conversations about research.

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In medical research, it is vital that we frame our studies so that they are relevant and worthwhile to patients. However, in the context of rare diseases it is often difficult to obtain a consensus from large numbers of patients. This is a challenge that frequently faced in the Department of Rheumatology at UCL, where conductions such as systemic lupus erythematosus (SLE) and antiphospholipid syndrome (APS) are rarely seen at a population level. Dr Thomas McDonnell (a post-doctoral research fellow), Dr Chris Wincup (a clinician and MD student at UCL) and their supervisors Prof Anisur Rahman and Dr Ian Giles were keen to find novel ways of surveying the opinion of patients with SLE and APS.

“As a scientist I rarely interact with patients, so it is tough to know if what I find interesting is what patients are interested in. I’d taken an interest in a clotting factor (FXa) and antibodies to it found in both APS and SLE patients. They’re interesting antibodies capable of acting in all sorts of ways, however, I was worried that it may not necessarily interest patients. We thought they’d be more interested in treatments and cures than what is going on behind the scenes as it were.” This confusion on what patients are or are not interested in is based on assumptions prevalent in the scientific community that patients are less focussed on the endpoints of treatment, however as Dr McDonnell explained “lots of our funding is charity based, and charity money is raised by donations, events, things people do to try and help the patients, so, before taking a new route of research, we wanted to make sure it’d be something that gave the charities their money’s worth and ask the people with the diseases what they thought.”

Together, the team devised an online questionnaire, hosted on Survey Monkey, which they disseminated online using a variety of social media platforms. They enlisted the help of patient charities including LUPUS UK and APS Support UK and an expert patient to review the proposed questions. Within 4 weeks of the survey being live they had amassed almost 550 responses. Responses were not only from the UK but worldwide including patients from Ireland, Sweden, Holland and the United States. When considering the high number of respondents, Dr Wincup had this to say; “We were amazed to have seen such a positive response in a short period of time! We are very grateful to the assistance that we were offered from both of the charities involved and we saw a high number of responses coinciding with when the charities shared the questionnaire on their social media accounts.”

The results of the widescale patient survey made for interesting reading. Patients were overwhelmingly open to new therapies and were interested in new blood tests to monitor disease activity whilst over 87% of patients felt that the proposed project scored 9 or above when asked to score on how important the research was on a scale of 1-10. “The most interesting data came from a free text box that we left open when asking patients what they were interested in” explains Dr McDonnell, “when analysed, patients mentioned mechanistic research more often than things like flares and pain. In fact it was the 5th most mentioned topic, which was a pleasant surprise”.

The results of this study have now been published in Rheumatology Advances in Practice and have been presented at both national and international conferences. In addition, the group are now looking to repeat this novel patient engagement technique in other projects. They have recently closed a further survey cycle in which they canvased opinion on from patients with SLE regarding diet (in collaboration with Dr Liz Jury and her PhD student George Robinson). They have also launch another survey looking at patient concerns relating to pregnancy in rheumatoid arthritis (with Dr Charles Raine).

Dr Wincup felt that there were a number of exciting outcomes from the project. “The real strengths of this type of engagement are that it is quick to conduct, cost effective and can result in gaining valuable insight from a large number of patients even with relatively rare diseases like SLE and APS. We are very grateful to all those who completed and shared our survey and for the assistance we received from the patient charities. This is really helping us focus our research on things that are genuinely important to patients with the disease.”

Lots to think about here in terms of how patients and researchers can interact through social media and digital techniques. These thoughts have been echoed by several Public Engagement practitioners across the sector recently, highlighting examples of social media being used for two-way engagement. You’ll find much more on this debate at the following links:

• NCCPE ‘what works’ : Public Engagement in Practice
• Oxford Sparks Festival 
• Connecting scientists and the public in online dialogues about science
• Planning your online engagement strategy? Don’t go it alone. Well-chosen partnerships can maximise reach and impact
• Using social media to engage the public in your research