JMIR Publications

ABSTRACT

Background:

The Connecting2gether (C2) platform is a secure online information-sharing tool that aims to improve care for children with medical complexity (CMC) and their families. A key feature of C2 is secure messaging, which enables parental caregivers (PCs) to communicate with their child’s care team members (CTMs) in a timely manner.

Objective:

(1) Evaluate the use of a secure messaging system, (2) Examine and compare the content of messages to email and phone calls, and (3) Explore PCs’ and CTMs’ perceptions and experience using secure messaging as a method of communication.

Methods:

This study is a sub-study of a larger feasibility evaluation of the C2 platform. PCs of CMC were recruited from a tertiary-level complex care program to use the C2 platform for six months. PCs could invite CTMs involved in their child’s care to register on the platform. Messages were extracted from C2, and phone and email documentation from the electronic medical record (EMR). Quantitative data from C2 usage reports were analyzed using descriptive statistics. Messaging content codes were iteratively developed through a review of the C2 messages, phone, and email communication. Semi-structured interviews were completed with PCs and CTMs. Communication and interview data were analyzed using thematic analysis.

Results:

36 PCs and 66 CTMs registered on the C2 platform. A total of 1878 messages were sent on C2, with PCs and nurse practitioners sending a median of 30 and 74 messages, respectively. 85.5% of all C2 messages were responded to within 24 hours. Email and phone calls focused primarily on clinical concerns and medications, whereas C2 messaging focused more on parent education, proactive check-ins, and non-medical aspects of the child’s life. Four themes emerged from the platform users interviews related to C2 messaging: Connection to Care Team, Efficient Communication, Clinical Uses of Secure Messaging, and Barriers to Use.

Conclusions:

Overall, our study provides valuable insight into the benefits of secure messaging in the care of CMC. Secure messaging provided the opportunity for continued family teaching, proactive check-ins from healthcare providers, and casual conversations about family and child life, which contributed to PCs feeling an improved sense of connection with their child’s healthcare team. Secure messaging can be a beneficial additional communication method to improve communication between PCs and their care team, reduce the associated burden of care coordination, and ultimately enhance the experience of care delivery.