Potentials and barriers of using digital tools for collecting daily measurements in multiple sclerosis research

Abstract

Objective Digital tools offer new ways of collecting outcome data in intervention research. Little is known about the potentials and barriers of using such tools for outcome measurement in multiple sclerosis trials. This study aimed to examine reporting adherence and barriers experienced by people with multiple sclerosis in an intervention study using three different digital tools for outcome measurement. Methods This was a mixed-methods study conducted in the context of a randomized controlled trial. Data collected during the randomized controlled trial were analysed to assess reporting adherence. Twenty-three semi-structured, in-depth interviews were conducted to investigate randomized controlled trial participants’ experiences. Results Reporting adherence was high for all three measurement tools, but lower in the control group. Four main barriers were defined: (1) the self-monitoring aspect and repeated tests imbedded in the digital tools affected participants’ behavior during the randomized controlled trial. (2) Self-monitoring caused some participants to worry more about their health. (3) Passively collected data did not always correspond with participants’ own experiences, which caused them to question the validity of the collected data. (4) Daily reporting using different digital tools placed a significant burden on participants. Conclusion The study indicates a high reporting adherence using digital tools among people with multiple sclerosis. However, future studies should carefully consider the overall burden imposed on participants when taking this approach. Measures should be taken to avoid the potential unintended effects of the self-monitoring and gamification aspects of using digital tools. These measures could include passive monitoring, reducing the frequency of reporting and blinding participants to their own data.

Use of smartphone-based remote assessments of multiple sclerosis in Floodlight Open, a global, prospective, open-access study

“…Our observations suggest that passively collected data may be key to generating longer-term datasets with minimal burden to study participants. This is in line with findings previously reported by independent researchers that passively collected measurements are preferable 24 . However, factors limiting the acceptance of passively collected data including issues with battery consumption and privacy concerns need to be addressed to facilitate this type of data collection.…”

“…Independent qualitative research previously reported additional drivers and barriers of persistent use of the Floodlight Open app 24 , 26 . The use of reminders and notifications (note that most participants had this option available) 26 , a willingness to help clinical research 26 , and a perceived return on effort 24 were identified as potential drivers.…”

“…Independent qualitative research previously reported additional drivers and barriers of persistent use of the Floodlight Open app 24 , 26 . The use of reminders and notifications (note that most participants had this option available) 26 , a willingness to help clinical research 26 , and a perceived return on effort 24 were identified as potential drivers. Furthermore, making test scores available to the participants may instil in some a competitive behaviour with oneself, thereby leading to a more persistent use of the app 24 .…”

“…The use of reminders and notifications (note that most participants had this option available) 26 , a willingness to help clinical research 26 , and a perceived return on effort 24 were identified as potential drivers. Furthermore, making test scores available to the participants may instil in some a competitive behaviour with oneself, thereby leading to a more persistent use of the app 24 . Making these test scores available may, however, also remind participants of their condition 24 .…”

“…Furthermore, making test scores available to the participants may instil in some a competitive behaviour with oneself, thereby leading to a more persistent use of the app 24 . Making these test scores available may, however, also remind participants of their condition 24 . Furthermore, an essential and unchanging design and lack of gamification could potentially lead to boredom when performing repetitive tasks such as when regularly and frequently taking the Floodlight Open tests 24 .…”