OpenPPRN is a collaboration between multiple Patient-Powered Research Networks to build an open, shared patient-facing web & mobile technology infrastructure.
With this "Open" PPRN, in the push of a button, you'll be able to deploy a Patient-Powered Research Network that is complete with:
Patient Registry Research Survey Platform Health Data Aggregation & Visualization Mobile Health Tracking Patient Social Network
Customizable: Select just the features you want.
Patient-centered and patient-facing. As the interface for your patients to interact with your research network, the web & mobile UI is designed with reward systems from behavior research to engage patients to help advance research for their condition. Patient engagement is the first and primary concern.
Open Source. Open Data. The data is owned by the patients, stewarded by the patient advocacy group. Freedom: host your network anywhere, move your network and the data at any time. Add to the network to address new needs in the future. That's what makes this an "open PPRN".
The whole user experience is designed mobile-first. Patient registration, research surveys, and health tracking are designed to be done from the patient's mobile phone.
Plug-ins to third-party data APIs enable patient health data to be aggregated from hundreds of mobile health apps, so patients can use the tools they find most valuable to track their health data. Plug-ins to patient medical record APIs enable the integration of EHR data. Patients see these visualized on the web & mobile interface.
Patients register for your PPRN to learn more about their condition, learn and contribute to current research, and (optionally) learn and/or socialize with other patients.
Researchers can distribute surveys out to the patients and segment who receives them based on the patients' health record data. Return findings directly back to patients. Data collection is additive. Each survey stands on the shoulders of previous data collected.
In the click of a few buttons, patients can authorize incoming data streams from hundreds of mobile health apps and participating EHR systems. Patients see a visual timeline of their health record and from their mobile phone can add real-time updates as symptoms and treatments change. Researchers can crunch this data to do things like perform predictive models of disease.
Patients can update their health from their mobile phone as symptoms and treatments change to grow a longitudinal perspective of their health between physicians' visits.
Patients can see other patients on a map, and see a listing of support groups / patient meetups near them. And ask and answer questions of one another.
Patients can up-vote research hypotheses they want researchers to look into. Researchers can identify the top research questions and tag them with a status, ie. if that a research question is under review.
Up front, patients sign a Universal Portable Informed Consent, authorizing their data contribution to research projects prospectively. Patients can specify categorical control of what types of research projects for which their data can be used, and for which it cannot.
A workflow to verify the diagnosis of patients who sign up for your registry is built-in.
You'll benefit from all other participating OpenPPRNs. Patients that land on the master OpenPPRN domain will choose their condition and get directed to your PPRN. Patients who register for other OpenPPRNs who have your condition will get registered with you.
Your OpenPPRN will be hosted on your own domain (ie. mycondition.org) and your own branding, colors, and content will make your OpenPPRN yours.
Searches by patients with your condition will list your OpenPPRN in search engines.