The Patient as Genomic Data Manager - Evaluation of the PROMISE App

Area of Science:

• Genomic Data Management
• Mobile Health (mHealth)
• Patient Empowerment

Background:

• Genomic data requires robust security and patient consent.
• Mobile applications offer potential for personalized health management.
• Previous research highlights patient interest in controlling their health data.

Purpose of the Study:

• To evaluate the PROMISE (Personal Medical Safe) mobile app for patient-led genomic data management.
• To assess user experiences and opinions regarding mobile health tools for sensitive data.
• To understand patient perspectives on data ownership and concerns related to genomic information.

Main Methods:

• A German research project involving 19 test patients.
• Utilized a mobile application for patients to accept or decline genomic data usage requests.
• Collected data through app evaluations, user experience surveys, and direct feedback on the PROMISE app.

Main Results:

• Most participants recognized the sensitivity of genomic data and deemed the PROMISE app appropriate.
• A majority of users favored being the responsible owner of their genomic data.
• Several participants expressed the need for a consistent point of contact for inquiries and app-related questions.

Conclusions:

• Patient-centered mobile health solutions can effectively facilitate genomic data management.
• Empowering patients with control over their genomic data is well-received.
• The integration of accessible support channels is crucial for successful mHealth adoption in sensitive health areas.