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Informed Consent

Understanding how people with rheumatic and musculoskeletal diseases (RMDs) use social media for health-related purposes

Dear participants

 

You are being invited to participate in a research study titled “Understanding how people with rheumatic and musculoskeletal diseases (RMDs) use social media for health-related purposes.”  This study is being undertaken by a team of international researchers and patient research partners.

 

Social media has been gaining increasing momentum in recent years and is used by different groups to stay up to date or exchange information. Social media tools are easily accessible and independent of geographical location. Therefore, social media also provides people with chronic conditions, such as rheumatic and musculoskeletal diseases (RMDs), with new opportunities to identify information about their condition(s) and treatment(s), as well as the ability to connect with other patients, carers, patient organisations and healthcare professionals. However, despite the premise of social media for people with RMDs, it is less clear how and why people with RMDs use social media in relation to their health and wellbeing.

 

For this reason, we have designed a survey addressed to people with RMDs to explore the use of social media and mobile technology for health-related purposes. This survey consists of two sections: (1) a general section asking about demographic data; followed by (2) the main section asking about social media use and perception. Even if you do not consider yourself as social media user, we are interested in your perspective and opinion on the topic of social media in general. There are no correct or wrong answers, since we are only interested in your personal perspective on the topic.

 

The whole survey will take you approximately 20 minutes to complete. Your participation in this study is entirely voluntary, and you can withdraw at any time. 

 

We believe there are no known risks associated with this research study; however, as with any online-related activity, the risk of a breach cannot be excluded to 100%. Your answers are anonymous, treated strictly confidential and only used for the purpose of this study. Source data of this study will be stored according to regulations for 10 years. No-one besides the study team will have access to the data.

 

Your responses will be included with responses from other individuals for analysis by the research team, in order to develop a better picture about how people with RMDs use social media for health-related purposes. These results, which will not be linked to any individual participant, may be published as research articles in print and online, and presented at conferences.

 

By clicking the ‘next’ button below, you agree to participate in this study and that we may use your anonymous data for analyses.

 

Thank you very much for participating in this study. Your contributions will help us to better understand how people with RMDs use social media for health-related purposes, and how to better address the needs and expectations of people with RMDs in the future.

 

If you have any questions, you can contact the study team at any time!

Email: socialmedia.RMDs@gmail.com

 

Simon Stones BSc (Hons), University of Leeds, School of Healthcare, United Kingdom

Paul Studenic MD, Medical University Vienna, Department of Internal Medicine 3, Division of Rheumatology, Austria

Alessia Alunno MD PhD, University of Perugia, Department of Medicine, Rheumatology Unit, Italy

Elena Nikiphorou MBBS/BSc, FRCP, MD(Res), PGCME, FHEA, Kings College London, Academic Rheumatology Department, United Kingdom


Socialmedia.RMDs@gmail.com, Social Media use in people with RMDs