Blue Button: An opportunity to engage patients in precision - PowerPoint PPT Presentation

Blue Button: An opportunity to engage patients in precision medicine and a national cohort Doug Fridsma MD PhD FACMI President & CEO, AMIA

Blue button is a campaign to empower patients to get electronic access to their data -- Supported by a portfolio of standards

Blue Button Pledge Program 3 Full list at healthit.gov/pledge

Today >50% of us can get our health records via Blue Button partners

Characteristics of national cohort data “ecosystem” • Decentralized control • Federation and data sharing (via standards) • Patient will be the one common feature • Unknowable and diverse requirements • Iterative, incremental development, since we will learn as we go • Continuous evolution and deployment • Tolerate differences in semantics, syntax, and sophistication • Path of least regret • Normal failures • Security is important, recovery and restoration even more so • Orchestration rather than command and control • We will be helping to orchestrate this work, rather than playing all the instruments

How can we leverage the blue button?The five things to standardize How should well-defined values be coded so that they are Semantic Meaning universally understood? Interoperability How should the message be formatted so that it is Content Syntactic computable? Structure Interoperability How does the message move from A to B? Transport How do we ensure that messages are secure and private? Security How do health information exchange participants find Services each other?A 6

Blue Button standards portfolio VA (V 1.0) Clinical care “View, Explanation Care Full extract Proposed summary Download, of benefits summary S4S Transmit (pub/sub) (MU2) Meaning National National National Free National vocabularies vocabularies vocabularies text/national vocabularies vocabularies Structure Free text CCDA CCDA CDA CCDA CDA wrapper FHIR – CDE plus “container” Transport http/ http/ SMTP / http/ ReSTful http/downloa ReSTful download download others? download Atom/FSS d Security Portal/passw Portal/passw X.509 Portal/ OpenID/ Portal/passw OpenID/OAut ord ord certificates password OAuth ord h API/Services yes

Structured vs Unstructured Data  S4S can leverage granular data through the CDE standard, FHIR resources, APIs, and industry best practice authentication and transport protocols  HOWEVER  Also need to include unstructured, comprehensive data  Still not possible to get a complete extract of your medical record from an EHR and import it into another EHR or another application  But the standards are nearly there to get us started

What we need to get started that will enable patients to contribute their data to a national cohort  A way to extract ALL patient data from an  Many of the standards are ready to test and use  “wrappers” around free text  A “begin file”/”end file” specification  Structure what you can, but don’t let perfect be the enemy of good  A way of structuring granular data  CDE standard is ready to test and use  Useful for identifying patient characteristics you wish to study  A way to group CDEs into logical groups of data  Data sets, case report forms, quality improvement reports  Build on this to create the right “building blocks” to support the national cohort