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Table 1 Summary of key components of the registry-enabled learning system (RCLS-CF)

From: A qualitative study of design stakeholders’ views of developing and implementing a registry-based learning health system


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

  1. The information in this table is based on stakeholder interviews with RCLS-CF program designers, advisors, leaders from pilot sites, and program sponsors/funders