Objectives: There is a lack of published data regarding patient interaction in basic scientific research, including methodologies for simple, cost-effective interactions and the outcomes of such studies. Therefore, we aimed to evaluate the ease of generating patient opinion data on specific scientific research projects whilst establishing a template for other groups to follow. Our secondary objective was to assess which research topics are of most interest to patients with SLE and/or APS.
Methods: Through patient-based interactions, we developed a lay summary of a mechanistic research proposal and a set of associated questions to assess patient opinion on this research topic. We disseminated the questions as an online survey with associated lay summary through patient-based charity websites and social media. The survey was open for 3 weeks.
Results: Of 527 respondents, 520 reported having SLE or APS. The patient response to the research proposal was overwhelmingly positive, with the majority expressing strong interest in the mechanistic aspect of the project. Analysis of free text box responses confirmed that the most popular research topics for patients were as follows: treatment, genetics, triggers, diagnosis and mechanistic research. Interestingly, patient interest in disease mechanisms featured more frequently than clinical topics, such as management of disease flares.
Conclusion: 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. The volume and distribution of positive response shows that patients are interested in mechanistic research.
Keywords: Social media; antiphospholipid syndrome; patient attitude to health; study design; systematic lupus erythematosus and autoimmunity.