JMIR Publications

ABSTRACT

Background:

Digital data collection has the potential to reduce participant burden in research projects that require extensive registrations from participants. To achieve this potential, the digital data collection tool needs to address potential barriers related to digital skills or participant characteristics.

Objective:

In this study, we seek to identify factors that may affect motivation for participation and adoption of a digital data collection tool in a research project on nutrition and multiple sclerosis (MS).

Methods:

The study was designed as a sequential mixed methods study with three phases. In phase one, 15 semi-structured interviews were conducted with individuals with MS. Interview guide frameworks were based on dimensions from the eHealth literacy framework and the Health education Impact questionnaire. Data from phase one was analyzed in a content analysis, and findings were used to inform the survey design in phase two that validates the results from the content analysis in a larger population. The survey consisted of 14 items, and it was sent to 1000 individuals with MS (response rate 42,5%). In phase three, findings from phase one and two were discussed in relation to how these factors might affect motivation for participation and adoption of the digital tool.

Results:

The following three categories were identified in the content analysis of the 15 individual interviews: 1) Life with MS, 2) Use of technology, and 3) Incentives for participation. Phase one findings were tested in phase two’s survey in a larger population (n = 1000). Majority of participants were comfortable using smartphone technologies and participated actively on social media platforms. MS symptoms did cause limitations to the use of web pages and apps when the given pages had “screen clutter”, too many colors, or too small buttons. Life with MS meant that most participants had to ration their energy levels. Support from family and friends was important to participants, but support could also come in the form of physical aids (walking aids and similar) and digital aids (reminders, calendar functions, medication management). Factors that could discourage participation were particularly related to time it would take every day, and lack of good tool for digital data collection with easy-to-use design. Biggest motivations for participation were to contribute to research in MS, to learn more about one’s own MS and what affects it, and to be able to exchange experiences with other people with MS.

Conclusions:

MS causes limitations that put demands on the tool developed for digital data collection. The tool can facilitate good chances of high adoption rates, but the tool needs to be supplemented with clear and simple project design and continuous communication to participants. Motivation factors should be taken into consideration in both project design and data collection tool.