Article Text

SP0183 Social Media in Rheumatic and Musculoskeletal Diseases: The Importance of the Patient Perspective and Mapping Resources
  1. J. Meesters1,2,3
  1. 1Department of Orthopaedics, Rehabilitation and Physical Therapy
  2. 2Department of Rheumatology, Leiden University Medical Center, Leiden
  3. 3Knowledge Center, Sophia Rehabilitation Center, The Hague, Netherlands


INTRODUCTION A formal body of knowledge is a prerequisite for effective self-management for patients with rheumatic and musculoskeletal diseases (RMD) [1]. Health-related information is offered to patients via different modalities (e.g. leaflets, the Internet, contact with a health professional, education programmes) and the patient preferences regarding these modalities differ among individuals [2]. The availability and use of the Internet to acquire health and disease related information grows rapidly among patients [3].

Social media (SM) are important additions to the range of conventional methods of information provision since SM provide platforms to create and publish information via the Internet. Moreover, the content of social media is user generated and the platform provides a high degree of interaction between creator and viewer, and can easily be integrated with other sites [4]. SM gives patients and their caretakers the opportunity to gather information, share stories and discuss concerns or other important issues [3].

Because, SM are dynamic and user generated they often have substantial benefits over static web-based information that for example requires an administrator to keep all information up-to-date. In addition the fact that most information is provided by the users contributes to the fact that the patient perspective is represented in SM.

However, since the use of SM in health care for RMD patients is relatively new, SM could benefit from previous experiences and expertise in the field of information provision and educational programmes. Much of what works using SM can be found in the theories and approaches used for traditional programmes; e.g. understanding target audiences and their information preferences, and developing tailored messaging for different audience segments are therefore priorities for SM initiatives [5].

This lecture regards the lessons that can be learned from previous work, focusing on two aspects that are potentially important for the implementation of SM in RMD patients.

  1. The importance of the representation of the patient perspective (i.e. what aspects of disease and health care are important to RMD patients) in SM is elaborated.

  2. The ability of SM to map resources (i.e. anything that helps the patient cope with their health problem like the availability of rheumatologists, physical therapists, pools or gyms with special programs) in the patient’s vicinity will be elaborated.

Patient perspective regarding the contents of SM - Methods to study and describe the patient perspective used in previous studies within RMD are discussed.

- The applicability and relevance of these studies for SM are discussed.

- Recommendations to match the patient perspective with the contents of SM are given.

Mapping resources in SM - Methods to identify which resources are important to the users (i.e. RMD patients) are discussed.

- Examples of mapping resources and to keep the resources up-to-date are discussed.

- Recommendations to map resources and integrate them in SM for RMD are given.

  1. Taal E, Rasker JJ, Wiegman O. Patient education and self-management in the rheumatic diseases: a self-efficacy approach. Arthritis Care Res 1996; 9(3):229-38.

  2. Meesters J, de B, I, van den Berg M, Fiocco M, Vliet VT. Unmet information needs about the delivery of rheumatology health care services: a survey among patients with rheumatoid arthritis. Patient Educ Couns 2011; 85(2):299-303.

  3. The Social Life of Health Information. Date accessed: 13-3-2013.

  4. Medical Subject Heading database (MeSH). Date accessed: 15-3-2013.

  5. Korda H, Itani Z. Harnessing social media for health promotion and behavior change. Health Promot Pract 2013; 14(1):15-23.

Disclosure of Interest None Declared

Statistics from

Request permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.