Governance for personal health records

Area of Science:

• Health Informatics
• Health Services Research
• Patient Engagement

Background:

• Personal health records (PHR) are emerging health technologies designed to increase patient involvement in their own healthcare.
• Despite growing interest in PHRs, there is a notable absence of discussion regarding organizational-level governance strategies for these systems.
• Effective governance is essential for the successful implementation and utilization of health technologies like PHRs.

Purpose of the Study:

• To develop a comprehensive governance model for personal health records (PHRs).
• To analyze and compare the governance practices of early adopters of PHRs across various sectors.
• To identify gaps in current PHR governance, particularly concerning patient involvement.

Main Methods:

• A governance model for PHRs was conceptualized and developed.
• The proposed model was compared against the actual governance practices of organizations that have adopted PHRs.
• Data were collected from diverse sectors including healthcare providers, insurers, government agencies, and commercial entities.

Main Results:

• Significant variation exists in the decision-making structures among different adopting organizations.
• Business operations were consistently integrated into governance frameworks across all surveyed groups.
• A critical finding was the complete absence of patient representation in the governance structures of all surveyed organizations.

Conclusions:

• Current organizational governance for personal health records (PHRs) predominantly excludes patient input.
• To foster patient-centered care, future policy development for PHRs must mandate patient inclusion in governance structures.
• Integrating patient perspectives into PHR governance is vital for aligning technology with patient needs and enhancing healthcare engagement.