RARE DISEASES ON THE NETWORK. OPPORTUNITIES AND ORGANIZATIONAL CHALLENGES IN THE DIGITAL SOCIETY

Background. Contemporary society is the result of a remarkable change in institutional culture, especially for health-related organizations: health corporations and patient associations. Integration in the digital sphere, emphasizing incorporation in social networks as an organizational strategy, is a challenge that provides opportunities to improve the interaction between professionals and citizens. Methodology. Comparative study of the use of digital technologies, highlighting social networks, carried out by health organizations and those of patients with rare diseases. Techniques used. Selection of a sample Spanish hospitals and a sample organizations peoples affected by rare diseases to compare their presence in the most used social networks. Results. Both health institutions and, in particular, associations of patients with rare diseases, are increasingly use digital technologies to interact with citizens. Conclusions. Since patient associations are more present and active on social networks than health organizations, there is a need for the latter to develop an organizational strategy to improve digital interactivity in order to respond needs of their users to take advantage of the positive effects that result from its use.