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OpenPPRN

Collaborated with multiple Patient-Powered Research Networks to build an open-source, patient-facing web and mobile platform that enables instant deployment of fully functional research networks with registry, surveys, health data integration, and patient engagement tools.
  • Health
  • Frontend Dev
  • Backend Dev
  • Product Strategy
  • Community Dev
  • Ruby on Rails
  • PostgreSQL
  • React
  • D3.js

Overview

We worked with multiple Patient-Powered Research Networks (PPRNs) to create OpenPPRN, an open, shared patient-facing technology infrastructure for web and mobile.
With just the push of a button, a patient advocacy group can deploy a fully functional research network complete with a patient registry, research survey platform, health data aggregation & visualization, mobile health tracking, and a patient social network.

Key Features

  • Patient Registry — Centralized, secure platform for enrolling and managing patient participants.
  • Research Survey Platform — Create and distribute condition-specific surveys to participants for ongoing studies.
  • Health Data Aggregation & Visualization — Integrates patient-generated data from wearables, health apps, and medical records; presents this data in easy-to-read charts.
  • Mobile Health Tracking — Designed mobile-first for convenient, on-the-go tracking of health metrics.
  • Patient Social Network — Allows patients to connect, share experiences, and support each other.

Core Philosophy

  • Truly Patient-Centered — Interfaces are built for patient engagement, using behavior research and reward systems to encourage participation in advancing research.
  • Open — Fully open source, with patient-owned data stewarded by advocacy groups. Host anywhere, move your network and data at any time, and extend functionality as needs grow.
  • Mobile-First — Every major workflow is optimized for mobile use, including registration, survey participation, and health tracking.
  • Data-Friendly — Plug-ins for hundreds of mobile health apps and APIs for integrating Electronic Health Records (EHR) give patients a unified view of their health data.

Technical Highlights

  • Platforms: Web & Mobile (mobile-first design)
  • Architecture: Modular, open-source framework for rapid customization and deployment
  • Data Sources: Wearable devices, mobile health apps, EHR APIs
  • Visualization: Interactive dashboards for patient-owned health data

Outcome

OpenPPRN empowers patient advocacy groups to rapidly launch their own research networks without starting from scratch, while keeping patients in control of their own data. By combining open-source flexibility with mobile-first engagement tools, the platform makes it easier than ever to connect patients and researchers in advancing medical knowledge.

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