Table 1 Summary of key components of the registry-enabled learning system (RCLS-CF)
Topic | Core idea |
|---|---|
Program origins | • The program is informed by and to some extent modeled on existing initiatives • The program is informed by two important ideas: the learning health system and co-production |
Design principles | • A shift to more partnership-based relationships between patients and clinicians can be facilitated by new forms of technology-enabled data-sharing • Data generated by patients and clinicians can be repurposed for other uses, including research and service improvement • The key stakeholders must be involved in co-design of RCLS-CF • The data collected must be meaningful to patients and clinicians and reflect their priorities |
Design constraints | • The technology will need to be smooth, effective, and time-efficient to use • Ensuring security and privacy of data will be essential |
Implementation tactics | • Program Scope: The RCLS-CF program will focus primarily on developing the dashboard that reflects patient’s goals, treatments, and outcomes • Securing universal support from clinicians and patients may be challenging • The project is complex and may generate some frictions |
Risk mitigation | • The program may create additional burdens and risks for patients • The program may create or be influenced by forms of inequity |