Table 5 CAPTURE-JIA electronic pilot clinician feedback

1. What went well?

• Patients seemed enthusiastic about the concept of CAPTURE-JIA data collection.

• The Agileware system feels and looks “professional”, flows in accordance with the clinical consultation and becomes easier with familiarity.

2. What didn’t go so well?

• Some clinicians reported that the system occasionally crashed mid-data entry.

• Forms took much longer to complete for patients who were diagnosed many years earlier (and many of the data items were missing).

• Some data items may need a “not known” or “not checked today” tab (e.g. baseline data items, uveitis, height/weight).

• Some results may not be available at the time of completing the form (e.g. bloods). How would you advise centres to complete these forms?

3. What (if anything) would have improved the process?

• Recruiting new patients only rather than including historical patients.

4. Additional comments

• Fantastic to have developed an IT solution to support collection of the dataset.

• The forms are far easier to complete fully and less time consuming for newly diagnosed patients.

• The forms are considerably less time consuming if completed in retrospect (when all data items are readily available).

• May need to consider working with a lead clinician at each centre.

5. Timings

• Ranged from 11 to 30 minutes (average 20.7 minutes per form).

• Competing priorities may prevent dataset completion in the busy clinical setting.

• Data entry became faster with experience.