A large part of people with IBD in NL already use ICT for self-management of their condition, and are interested in using a novel innovation such as a ‘smart’ toilet seat. But there are also people who won’t or can’t use ICT for self-management, or are sceptical of certain innovations because of concerns for privacy, data agency, or cost.

We researched use of ICT for self-management in people with IBD in this paper now published in JMIR, in which we (truly!) combined qualitative and quantitative methods to find patterns in preferences for using technology for self-management by people living with Inflammatory Bowel Disease.

The work is a collaboration of OnePlanet Research Center and Radboudumc University Medical Centre, with a vital role for the Crohn & Colitis Foundation NL. Over seven hundred people living with IBD filled out our extensive questionnaire on self-management and technology.

What (I think) makes this paper special (to me, at least) is the method: we used qualitative analysis to find themes in the open question data, which we then analysed using results from the quantitative analysis to make meaningful stratifications in the data.

We then used Epistemic Network Analysis to find differences in which subgroups of people with IBD talked about self-management and technology. ENA looks for meaningful patterns in networks of codes: “those who say X are also likely to say Y”.

The ENA revealed that there were distinct subgroups in our population. For instance, participants who were already using ICT viewed it as a means to document their condition for their own use and for experimentation, monitor physical activity, and establish connections with healthcare professionals to share their insights. On the other hand, participants not currently using ICT regarded it as a tool to document their condition to support professional diagnosis. Concerns also differed between sub-groups. This analysis shows that there can be no one-size-fits-all solution in tech for health.

Cite as:
Hermsen S, Tump D, Wentink E, Duijvestein M. Investigating Patient Perspectives on Using eHealth Technologies for the Self-Management of Inflammatory Bowel Disease: Mixed Methods Study. J Med Internet Res 2024;26:e53512. doi: 10.2196/53512. PMID: 39240663.