Results of the 2022 User Satisfaction Survey of OrphaNews
The OrphaNews team held a survey during the first semester of 2022 in order to investigate the level of satisfaction of the newsletter’s readers. The survey was addressed to readers of the international newsletter through a publication in the newsletter, and via social medial channels. In total 69 users replied to the questions concerning OrphaNews. The questions ranged from their reading frequency, their interest in the different sections of the newsletter, the value of the newsletter content as well as an open question on how the newsletter could better serve their needs.
Survey respondents were mainly healthcare professionals, generally located in European countries, including Italy, Spain and France. The results also show that almost 86% of the 69 respondents open the newsletter at every edition with a major interest in the scientific news provided within the letter. The responses showed a highly favourable view of the newsletter and its content, as readers noted that the information provided was valuable for the personal and professional use.
Respondents were also given the opportunity to answer an open question on how the newsletter could better serve their needs. Suggestions included comments on the user-friendliness of the newsletter which could improved for a better reader experience. Other comments were made regarding the exhaustiveness of the newsletter, both in terms of subjects and geographical areas covered; and suggested to broaden the scope of research. Some remarks also included the creation of a LinkedIn account to increase the number of readers, the increase in timeliness in pointing out research grant opportunities, and finally the increase in the number of papers analysed. All these suggestions will be considered to see what can be put into action to improve the newsletter.
Though the feedback gathered during this survey was majoritarily positive, the respondents are only a small sample of nearly 12 000 subscribers to OrphaNews International and the representativity of OrphaNews’ readership cannot be guaranteed. The comments and input received will be duly considered in future decisions concerning the newsletter.
The OrphaNews team would like to thank all survey respondents for their time and loyalty to the letter dedicated to the rare disease community.
