In the environment of 21st century technology, the transformation of information acquisition
of health care and patients has had an increasing emphasis. Despite the earlier authoritative
doctor-patient relationship, a need for an equal, cooperation-based communication has emerged
and there are so many digital healthcare projects to achieve this (Koskova 2015).
Information acquisition on the internet has allowed patients that based on the increasingly
available medical information they acquire information about their condition, become part of
patient communities, ask for second opinions, and become committed helpers of their doctors in
their disease (Meskó et. al 2017).
This can be especially true for patients with rare diseases, where a diagnosis might take even
a decade, the patient needs lifelong condition maintenance and treatment, if it is available. While the proportion of patients with rare diseases is low compared to the whole of society, the number of such patients is approximately 30 million in Europe (EURORDIS), which means patients
and their relatives need not only a harmonized health care system, but extensive information so
that they can live with the rare disease with less difficulty.
The aim of our study was to present the options of information acquisition in the social
media, focusing on Twitter, via an interdisciplinary and social approach. In this study therefore
we carried out a Big Data based social media analysis based on #Asthma and #CysticFibrosis
databases of the Symplur corporation. This study results contain the complete online communication of 7 years (2012-2019) regarding these hashtags. The analysis has few levels including
semantic research, stakeholder and hashtag review, engagement, and the whole tweet activity
exploration.