Network analysis of June 2017 #irishmed tweetchat on Rare Disease

Gareth Robinson, Ashleen Crowe, Fiona McLaughlin, Liam Farrell, Amy McKnight, Helen McAneney

Research output: Contribution to conferencePosterpeer-review


The EU definition of a rare disease is that it affects fewer than 5 in 10,000 people in the general population. These diseases are individually rare, but collectively common and represent a significant public health problem. One in 17 people will be affected by a rare disease in their lifetime.

A rare disease by definition has small numbers of individuals affected, which makes it very difficult for those individuals living with rare disease(s) to have their voice heard in comparison to common, complex diseases that affect a significant proportion of the adult population. To combat this challenge, individuals living and working with rare diseases are coming together and providing an evidence-base to secure progress.

Frequent issues raised by people living and working with rare disease(s) include the lack of accessibility to relevant information, their frustration not finding good disease-based information, and their difficulty connecting with others having the same disease / dealing with similar issues to themselves. The scale of the problem is highlighted in the 2017 European Commission report “Rare Diseases: a major unmet medical need”.

The importance of improving communication strategies and also listening to and promoting rare disease voices is essential in establishing unmet need, increasing awareness of public health issues, and improving the lives of individuals living and working with rare disease(s).

#irishmed is a weekly tweetchat held on Wednesday at 10pm GMT (5pm ET) for 1 hour curated by Dr Liam Farrell. A tweetchat on rare disease took place on 7th June 2017, on five key topics for discussion. Data is from the transcripts of the #irishmed hashtag from 5-8th June.

The Tweetchat community interactions and connections for the network analysis were elicited through the tweet, retweet, and mention functions of the Twitter platform. The effect of temporality and topic area on the discussion was also examined. Analysis was carried out in UCINet.

109 participants and 930 tweets occurred with 4.571 million impressions. Participants were from seven countries, including Ireland, Australia, UK, USA and Canada. Network graphs have been plotted and key players identified. Most participants were active in discussion with tweets, retweets and use of mentions in messages. Certain topics created denser network than others, with a few participating only as receivers of the information.

Content of tweets to be analysed to identify key emergent themes for future work.

The number of participants and tweets show an interest in the #irishmed tweetchat format. The number of impressions further reveal an outward engagement beyond those in the tweetchat, with the potential of increased public awareness of the rare disease conditions. Twitter is an excellent approach to minimise geographical barriers, connect individuals, and this study shows contributors are passionate about advocating for rare disease(s). Network analysis is a useful method to illustrate and analyse such data to better understand the dynamics, discussions, and roles that participants play.
Original languageEnglish
Publication statusAccepted - Mar 2018
EventXXXVIII Sunbelt - International Network of Social Network Analysis Conference 2018 - Utrecht, Netherlands
Duration: 27 Jun 2018 → …


ConferenceXXXVIII Sunbelt - International Network of Social Network Analysis Conference 2018
Period27/06/2018 → …


  • Rare Diseases


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