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Your life, your health, your data. We are #OpenPHR. We are Legion. We never surrender your health data. We keep you in charge. Join us.
“Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” World Health Organization (emphasis on social well-being ours)
OpenPHR is not only, if at all, a record. It's a tool made by and for humans beings striving for a state of complete well-being. OpenPHR enables them to improve the efficiency of the connections they already built, mend the ones that failed and create new ones. No one should remain at the fringe. We all deserve to be at the center.
All humans being have the right to be at the center of healthy networks. The only way to achieve this healthy network effect is radical decentralization.
Fully, 100% Free and Open Source Software developed in public is a must to:
In 2018, allowing anyone's health data to be processed by even one single line of proprietary (aka defective by design) code is ludicrous and harrowing. Healthy friends don't let friends be fooled by the trap of proprietary software.
By default, only 1 person is able to access your personal health data: the person who is the source and subject of the data (you), or your designated caregiver. OpenPHR uses state-of-the art public key cryptography. The private key can be safeguarded from loss or destruction by Shamir's Secret Sharing algorithm (a form of secret sharing, where a secret is divided into parts, giving each participant its own unique part). For instance, in a 2/3 scheme, give 1 part out of 3 to your next of kin, another to your significant other and a last one to your family doctor. In case of private key loss, 2 of those 3 parts are sufficient to recreate your key and decrypt a backup of your data. Further access requests are granted by the person in charge: you. You add peers to your healthy network and choose precisely what they can or cannot access by encrypting the session key with their public key. A slight modification of GnuPG source code will be required to allow this. All access requests are logged.
OpenPHR will not be Healthbook, a replica of the dominant, unhealthy social network. It will be a peer-to-peer network, and more precisely a friend-to-friend network.
Candidate models for the topology and transport layers are:
Cloud is for encrypted backup only. OpenPHR is targeted at the 2.9 billion smartphone users expected in 2020. It should be available for Android. /e/ is an alternative OS of choice.
If being healthy is the result being at the center of a healthy social network, the data model should be a graph. Early attempts at introducing software in clinical settings were mostly related to billing. Today's closed medical ontologies such as SNOMED or diseases coding systems such as ICD-10-CM are useful for epidemiological studies but the primary reason for using them is to make sure that providers are getting paid. In France for instance, personal computers entered family doctors practices because the universal and mandatory health insurance (Social security) wanted to outsource billing. The insurance smartcard based system required a PC. EHR use became widespread only a few years later, pioneered by a company that was offering it free of charge to doctors in order to capture prescription data and sell it to the pharmaceutical industry. RDBMS were perfectly adapted to those outdated business-centered models.
We want to focus on health: physiological processes, biological data, interactions with the social environment. A graph database is the perfect fit to power healthy networking tools.
Graph database candidates: