Gal Yavetz*, Department of Communication, The Gershon H. Gordon Faculty of Social Sciences, Tel Aviv University, Tel-Aviv, Israel Elad Segev, The Department of Communication, Tel Aviv University, Tel-Aviv, Israel Track: Research Presentation Topic: Building virtual communities and social networking applications for patients and consumers Presentation Type: Rapid-Fire Presentation Submission Type: Single Presentation Building: Mermaid Room: Room 2 - Aldgate/Bishopsgate Date: 2013-09-24 02:00 PM – 03:30 PM Last modified: 2013-09-25

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Background: Many technological innovations and specifically computer mediated communication (CMC) are bringing new opportunities for health organizations, regarding communication with patients.
Hemophilia is a rare inherited disease and a bleeding disorder that caused by lack of clotting factors. Hemophilia is on one hand a chronic disease that will follow the patient for his entire life and on the other hand a rare disease with a frequency of one male birth in 7500 (1:7500). Following by these unique aspects of hemophilia, hemophilia patients are managing a specific life style that includes: self treatment (by intravenous infusion), physical exercise on a regular basis and living with spontaneous bleeding that affect the joints, muscles and even internal organs. In the last few years, Hemophilia organizations are using social media and user generated content for connecting hemophiliacs with one another as platform of social support and self empowerment content.
Objective: This study will explain and explore the online tools that are established by hemophilia organizations around the world and focusing on Facebook Pages as the main medium for interaction. The main goals of this research are to identify and describe the differences of using social media between different countries, and explain the uses and gratifications of this global and cross language platform. Economic, medical and social services for each country will be taken into consideration for evaluating the differences. Another purpose of this study is to learn the using of social networks sites for self treatment evaluation and chronic disease management for the patient point of view.

Methods: The methodology for this study includes 30 semi-structured interviews with hemophilia patients and stake holders from 15 different countries.

Results: Main findings of this study indicate several gaps between different social groups which are relevant to the given technology. First, it has been shown that the users (patients and their relatives) usage of social media is mainly involving a communication within their peer group, instead of communicating with the organization. It also has been shown a deep gap between organizations from different countries and cultures. Organizations that work in developed countries with full accesses to clotting factor treatment are more likely to use social media for raising awareness. As opposed to organizations which lacking fund and treatment, it has been shown that the strategy and usage of social media is highly different in developed and fully supported countries. In this kind of organizations, the main usage of social media is community oriented communication.

Conclusion: Social media is used globally by hemophilia patients for communication with one another as a network of self empowerment and information. Even though, the communication is been held in public facebook page of formal organizations, the main interaction is used for patients and their relatives. Despite many differences regarding the use of the technology between facebook's guidelines for social organizations and hemophilia organizations, it has been found that hemophilia patients are using social media for the same purposes, regardless to their local environment.