A working prototype of an electronic system to help caregivers and children with chronic illness manage medications has been well received and, most importantly, demonstrates that young children can help ensure they receive medications on time throughout their day, according to a study recently reported in the Journal of Biomedical Informatics.

Kids with special health care needs who require multiple medications often miss doses, especially at school. The goal here was to design, develop and evaluate a “next generation prototype” of a personal health record to support medication management for these children. Developers relied on a user-centered, participatory design process involving focus groups, site visits, a pilot study, and online user testing.

Key Findings:

  • Discussions with parents, caregivers and educational facilities helped determine an ideal tool would: allow parents to easily set up flexible dosing schedules based on medication information; send classroom-appropriate reminders to kids and parents; record doses taken; and aggregate data for evaluation.
  • A pilot study of 20 children with cystic fibrosis, ages six to 12, found young kids could carry an electronic device to receive text message medication reminders and could participate in ensuring they receive medications appropriately throughout their day.
  • Testing of a scheduling prototype with 202 parents of children with chronic medication needs demonstrated most found the user interface to be clear and easy to operate accurately. This led to refinements and expansion of the scheduler into a medication management personal health record which incorporated information about the medications (My MediHealth).

Believing their most important contribution has been demonstrating young children can participate in their own medication management, developers are working toward a larger pilot study and plan to integrate MyMediHealth into a patient portal to assess its impact on medication adherence rates and quality of life.