‘Going viral in rheumatology’ - using... - LUpus Patients Un...

LUpus Patients Understanding and Support

3,413 members1,254 posts

‘Going viral in rheumatology’ - using social media to show that mechanistic research is relevant to patients with lupus and antiphospholipid

lupus-support1 profile image
lupus-support1Administrator
0 Replies

‘Going viral in rheumatology’ - using social media to show that mechanistic research is relevant to patients with lupus and antiphospholipid syndrome

TCR McDonnell C Wincup A Rahman I Giles

Rheumatology Advances in Practice, rky003, doi.org/10.1093/rap/rky003

Published: 02 February 2018

Abstract

Objectives

There is a lack of published data regarding patient interaction in basic science 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 systemic lupus erythematous (SLE) and/or antiphospholipid syndrome (APS).

Methods

Through patient-based interactions we developed a lay summary of a mechanistic research proposal and 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. 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 the most popular research topics for patients were: 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.

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. The volume and distribution of positive response shows that patients are interested in mechanistic research.

Issue Section: Concise Report

© The Author 2018. Published by Oxford University Press on behalf of the British Society for Rheumatology.

This is an Open Access article distributed under the terms of the Creative Commons Attribution License (creativecommons.org/license..., which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited.

academic.oup.com/rheumap/ad...

Written by
lupus-support1 profile image
lupus-support1
Administrator
To view profiles and participate in discussions please or .