Patient Data Sovereignty

Empowering Patients

Building systems that give patients granular control over who can access their health data, auditing every request and providing revocable, time-limited permissions for truly patient-centered care.

Patient-Centered Data Control

Healthcare data should belong to patients, not institutions. Our research develops innovative technologies that put patients in control of their health information while enabling appropriate clinical access.

We've created protocols and systems that balance patient privacy with clinical needs, ensuring that data sharing is transparent, auditable, and always under patient control.

Patient-initiated data granting (PING protocol)
AI with only responsability to the patient (Guardian Angel)
Guidelines direct to patients (PPM)
Exceptional responders in cancer therapy (NEER)

Current Healthcare Data Reality

Patient Control
Data Transparency
Clinical Access
Our Goal: Balance all three dimensions

Core Projects

Innovative systems enabling patient-controlled healthcare data sharing

PING Protocol

Patient-Initiated Data Granting

📦 Archived

A revolutionary protocol that enables patients to safely and selectively share their health records with healthcare providers, researchers, or other authorized parties through a secure, auditable system.

Granular Control: Patients choose exactly which data elements to share
Time-Limited Access: Permissions automatically expire and can be revoked
Complete Audit Trail: Every access request and data use is logged and visible
Marker Publication

PING Workflow

1
Patient receives data request
2
Review request details and purpose
3
Select specific data to share
4
Break-glass emergency data sharing.
5
Grant access with full audit trail

Oversight of clinical care at home and at clinic

Increased autonomy

Reducing the number of decisions that require clinic visits or clinician oversigh.

Integration across clinical-lifestyle domains

Decision-making effectively brings full clinical context to self-measrement.

Trust but verify

Review decisions made by clinicians for maximizing patient preference.

Guardian Angel

AI Agent dedicated to the patient

📦 Archived

Guardian Angel was a collaborative project, currently between the MIT Lab for Computer Science's Clinical Decision Making Group (MEDG) and The Children's Hospital Informatics Program (CHIP), begun in 1994 to put power and responsibility for health care more into the hands of patients

Unified Record: Multidisciplinary and multi-institutional health care means that every patient will encounter many care providers over a lifetime.
Decision-support Build and test comprehensive systems for patients suffering from chronic disease like insulin-dependent diabetes/
Patient preferences Patient utilities come first as they are the client of the Guardian Angel.
View at GA.org

PPM NEER

Network of Enigmatic Exceptional Responders

🟢 Active

A patient-powered research initiative that captures and analyzes data from cancer patients who have unique responses to treatments, transforming outlier cases into valuable insights for precision medicine.

Patient-Controlled Research: Patients determine how their data is used for research
Multi-Modal Data: Comprehensive collection of genomic, clinical, and microbiome data
Direct Benefits: Research findings shared directly with participants and broader community
Learn More & Enroll

Exceptional Responder Types

Early-Phase Trials

Patients who responded long-term to cancer treatments when only a tiny percentage typically do.

Ineffective Treatments

Individuals who responded well to drugs not generally effective for their cancer type

Exceptional Standard Response

Patients with remarkable responses to established therapies in unexpected ways

Technical Innovation

Advanced cryptographic and architectural approaches to data control

Cryptographic Privacy

Early (1990s) Advanced encryption to ensure data remains private while enabling selective disclosure.

  • • End-to-end encryption
  • • Opensource cryptographic architecture
  • • Secure patient-control and delegation

Immutable Audit Trails

Cryptographic logging ensures that all data access requests and permissions are permanently recorded and tamper-proof.

  • • Signed audit logs
  • • Immutable access records
  • • Clincal-data-type permissions
  • • Distributed verification
  • • Embedded in web pages or databases

Identity Management

Sophisticated identity verification and access control systems ensure only authorized parties can request and access patient data.

  • • Multi-factor authentication
  • • Credential verification
  • • Role-based access control
  • • Biometric verification

System Integration

Seamless integration with existing healthcare systems through standardized APIs and interoperability protocols.

  • • FHIR-compliant APIs
  • • EHR system integration
  • • Interoperability standards
  • • Legacy system support

Real-time Monitoring

Continuous monitoring and alerting systems track data access patterns and notify patients of all data sharing activities.

  • • Real-time access monitoring
  • • Automated notifications
  • • Anomaly detection
  • • Usage analytics

Privacy by Design

Every system component is designed with privacy as a fundamental principle, not an afterthought.

  • • Privacy-first architecture
  • • Minimal data collection
  • • Data minimization principles
  • • Purpose limitation enforcement

Transforming Healthcare Data Ownership

Generation of patient-controlled systems architected for policy.""

Patient Empowerment

Patients gain unprecedented control over their health data, deciding exactly who can access what information and for how long.

Enhanced Trust

Complete transparency and audit trails build trust between patients and healthcare providers, encouraging better data sharing.

Better Care

Appropriate access to patient data when needed most, improving clinical outcomes while maintaining privacy protections.

Research Acceleration

Exceptional responders provide insights that drive precision medicine advances, turning rare cases into breakthrough discoveries for broader patient populations.

Join the Data Revolution

Help us build a future where patients control their health data while enabling the best possible care. Explore our open-source projects and research.