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Abstract
Purpose It is important to access opinions from patients in designing research into systemic lupus erythematous (SLE) and/or antiphospholipid syndrome (APS). It is difficult to obtain useful information from large numbers of unselected patients in a short period of time. There is a lack of published research about how to achieve this objective. On-line surveys and use of social media offer a potential method to address this challenge. We developed a novel approach to access patient opinion regarding key objectives for mechanistic research in SLE and APS.
Methods We developed a one-page lay summary of a research project concerning investigation of serine proteases in patients with APS and SLE. This is a mechanistic laboratory project with potential future relevance to management of these diseases. Both the lay summary and an accompanying 9-question survey were refined with the help of an expert patient and patients’ charities, then disseminated as an online survey. The survey was open for four weeks, and was publicised via social media (Twitter, Facebook) and through the websites of LUPUS UK and APS Support UK. The survey data were then analysed and total project cost was £26.
Results Of 527 respondents, 520 confirmed having been diagnosed with SLE and/or APS. The majority of respondents were very positive about the research, expressing strong interest in its mechanistic basis. We provided a free text box for respondents to express their opinions about the most important research topics in SLE and APS. 277 respondents provided free text comments. The most popular research topics were Treatment (mentioned by n=86 respondents), Genetics (n=56), Triggers (n=50), Diagnosis (n=38) and Mechanistic Research (n=28). Interestingly, patients expressed more interest in disease mechanisms than in clinical topics such as management of disease flares.
Conclusions It is possible to conduct short term, valuable patient engagement at low cost, using an online survey and social media. This methodology may form a good template for future patient engagement. Our results suggest that patients are interested in mechanistic research.
Patients responses grouped for subject matter, this demonstrates the most mentioned and least mentioned research topics