Open Health Organizing Principles
v.01, 10.Jun.2016
Mission:
The open healthcare principles are a framework for responsible use and management of patient health data and information for the advancement of health quality, health research, and data ownership.
Open Healthcare Principles:
- Own your data: Access to your health data is a human right. The patient co-owns or fully owns every personal health data point about themselves.
- Share your data: Patients can choose with whom and how much health data to share.
- Right to data, right to be free: Patients are free to use their personal health data in any way.
- Data usage transparency: Visibility into who, what, when, how people/services use your health data.
- Simple national standard: The Standard Health Record (SHR) model is an open source schema, licensed under Apache 2.0 and open and available for collaboration, interrogation, and comment to any interested party, organization, or individual both domestic and international. a) Contributors will be vetted by SHR model stakeholders. b) No single party may have exclusive rights to the schema. c) Major changes to the standard must involve an open decision making process and a consensus between all stakeholders. d) The standards must be managed by an official/elected organizing body for a term of 8 years.
- Community engagement: The NLM/CMS/.gov will provide a national health literacy service to drive adoption of open health care principles, data models, understanding patient rights and health policy.
- Cost transparency: Transparent health care metrics including cost, performance, outcomes.
- Responsible use: Criminalize the pejorative use of personal health care data.
- National data: Seven (?TBD) key health data points from your Standard Health Record are required for US citizenship, to be used for the US census in de-identified research and policy formation.
- Health data as a public resource: Provide access to scientific research, develop tools and materials to engage the imagination of the public and accelerate scientific discovery.
- Clinician collaboration: Clinicians will collaborate with patients to responsibly use health data for betterment of public and patient health.
- Patient choice: Patients have transparent access to all medical options, insurance and costs, and the freedom to choose between them.
Authors and Contributors
Edwin Choi (@edwinychoi) and Juhan Sonin (@jsonin)