Background: The CARIN Alliance Code of Conduct represents the consensus view of a group of multi-sector stakeholders that include leading providers, payers, health IT companies, EHR companies, consumer platform companies, consumers, caregivers and others focused on advancing consumer-directed exchange across the U.S. The Code is based on internationally recognized standards including the Code of Fair Information Practices (FIP) (indicated in italics below) and numerous other consumer information sharing accepted principles and practices. The Alliance is working collaboratively with other stakeholders and leaders in government to overcome the policy, cultural, and technological barriers to advancing consumer-directed exchange.
The CARIN Alliance Code of Conduct
The CARIN Alliance vision is to rapidly advance the ability for consumers and their authorized caregivers to easily get, use, and share their digital health information when, where, and how they want to achieve their goals. Specifically, we are promoting the ability for consumers and their authorized caregivers to gain digital access to their health information via open APIs. We envision a future where any consumer can choose any application to retrieve both their complete health record and their complete claims information from any provider or plan in the country.
As an organization that handles personally identifiable health care information outside of HIPAA, we commit to the following regarding how we will handle personally identifiable consumer health care data.
The CARIN Alliance strives to build consensus with industry leaders, consumer and caregiver advocates, and others. As such, submitted comments will be reviewed for consideration by CARIN Alliance participants in our respective workgroups. We strongly encourage comments from all, but are especially interested in hearing from patients and caregivers. If you are interested in joining our workgroups, please let us know on the Contact Us page.
The US-based, National Institutes of Health’s All of Us Research program developed a universal consent framework that is described in more detail in the reference document here. These concepts may be helpful for organizations who are looking to implement the principles within the CARIN Code of Conduct.