381infl uence ePRO assessment [ 93 ]. Computer-adaptive testing (CAT) allows less
fi xed-item testing and might improve data quality and collection effi ciency [ 97 ].
IT solutions and applying stakeholders need to be aware of self-reported severe
health problems: they need to be fl agged by the system and/or at least reviewed and
judged by qualifi ed health personal (see earlier) and require feedback loops (e.g.,
for provision of personalized feedback and/or motivational support) that need to be
defi ned as well as presented to all process participants. Systems’ automatization
processes vary [ 41 ]. For example, patients may complete PRO assessments when
they want to, others rely on providers’ selection of assessment frequency and topics.
In addition, some systems alert patients, others do not, these different approaches
result in specifi c education processes for all stakeholders [ 41 ].
Educational Tasks
Interactive educational work for patients about PROMs is required when the new
terrain for health conversation is entered in rheumatology [ 98 ]. Patients might and
will be unfamiliar with ePROMs scores depicted respectively communicated to
them; thus, it is necessary to make resulting and represented scores intelligible and
to inform on the consequences of the results and the minimal clinical important dif-
ferences. In addition, explanation of the need for follow-ups and reminders is man-
datory. (Online) education programs that need to be developed in cooperation with
patient representatives might be of help and should consider European League
Against Rheumatism (EULAR) recommendations for patient education [ 99 ]. The
added value of the electronically generated data needs to be clarifi ed to all stake-
holders to achieve long- lasting benefi cial effects on the treatment process. Other
disciplines already have developed and evaluated programs for training clinicians to
effectively use PRO data in routine practice [ 100 ]. However, training of the staff
besides the physician and the patients is also mandatory, for example, nurses might
play a key role in ePROMs’ sustained implementation and utilization [ 20 , 93 ].
Legal and Regulatory Aspects
When implementing ePROMs into IT solutions, complex licenses and legal aspects
need to be considered [ 101 ]. “Copyleft” li censing has been proposed as a solution
[ 101 ].
In addition to the legal aspects mentioned in the previous “ Technical and Data
Security Aspects ” section of this chapter, patient’s consent for electronic data transfer
(e.g., via wireless/local area networks) and storage needs to be obtained regardless of
the (mobile) IT solution. In general, data avoidance and minimization issues need to
be taken into account, but the extent might change according to the underlying rheu-
matic disease and the responsible regulatory authorities [ 17 , 102 ].
15 Electronic Patient-Reported Outcome Measures (ePROMs) in Rheumatology