A pilot study to compare two data collection methods to elicit information about patients'experience with Crohn’s disease
: Face-to-face interviews versus social media research

  • Isabelle Vandersteen

Student thesis: Master typesMaster in Biomedicine Professional focus


Background: Qualitative research is widely used in the medical field, because it allows capturing experiences, priorities, needs and perspectives of the patients. In its very recent guidance on Patient – Focus Drug Development: Methods to Identify What Is Important to Patients: Guidance for Industry, Food and Drug Administration Staff, and Other Stakeholders, Guidance (June 2020), FDA mentions both face-to-face patient interviews and social media research as methods used to capture patients experience data. But limited data is available that compare these two methods and there is a need to determine if social media research can be used as a valid method to elicit relevant patient information.
Aim: The objective of this study is to compare the reliability, validity and relevance of the data collected through patient face-to-face interviews versus social media research to determine if social media research allows to validly capture relevant patients' information in a Crohn’s disease population. More specifically, the number of concepts and the level of detail used to describe each
concept (symptom, impact and treatment) will be assessed for both methods. The hypothesis of this research is that social media research also allows highlighting reliable, valid and relevant information as patient’s face-to-face interview.
Methods: First, a literature review has first been done to compare the two data collection methods, in any conditions. Then, patient face-to-face interviews and social media research have been compared by collecting information about Crohn’s disease patients through these two methods. Data has been analysed using ATLAS.ti, a qualitative software. The data were sorted, organized and sort into three categories: symptoms/signs, impacts and treatments.
Analysis: Social media had reported a total of twenty-nine concepts, including fourteen symptoms, four signs, six impacts, five treatment-related concepts. And patients interviewed had reported a total of thirty-five concepts, including twenty symptoms, six signs, eight impacts, six treatment-related concepts.
Conclusion: Social media research allows to collect relevant and correct information. And information collecting through face-to-face patients’ interview is more specific, detailed and comprehensive. But it is more time consuming. For a global understanding of the disease burden, treatment expectation, social media could be enough to guide research questions and treatment development.
Date of AwardAug 2020
Original languageEnglish
Awarding Institution
  • University of Namur
SupervisorMartin Desseilles (Supervisor) & Laure Delbecque (Co-Supervisor)


  • interviews
  • social media research
  • qualitative research
  • online
  • Crohn’s disease

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