Boundary Negotiating Artifacts in Personal Informatics: Patient-Provider Collaboration with Patient-Generated Data

Area of Science:

• Health Informatics
• Human-Computer Interaction
• Patient-Provider Communication

Background:

• Patient-generated data (PGD) is growing in chronic disease management, facilitated by smartphones and wearables.
• Existing commercial tools often lack robust support for collaborative use of PGD between patients and healthcare providers.
• Effective collaboration is essential for leveraging PGD in clinical practice.

Purpose of the Study:

• To examine patient expectations and current collaboration practices surrounding PGD.
• To identify challenges and opportunities in supporting patient-provider collaboration with PGD.
• To inform the development of better tools and models for PGD management.

Main Methods:

• Survey of 211 patients regarding their experiences with PGD.
• Interviews with 18 patients and re-analysis of 21 provider interviews.
• Analysis of collaboration stages and the use of boundary-negotiating artifacts.

Main Results:

• Collaboration around PGD occurs throughout the self-tracking process.
• Patients and providers actively create 'boundary-negotiating artifacts' to facilitate collaboration.
• Misunderstandings and privacy concerns are prevalent, indicating a need for enhanced support systems.

Conclusions:

• Current practices demonstrate the social nature of patient-provider collaboration with PGD.
• There are significant opportunities to improve PGD management by addressing identified challenges.
• Future work should focus on refining models of personal informatics and boundary negotiation theories.