0 Craig Miller Vice President, Health Strategy and Innovation Health Information Exchange: Facilitating data sharing between public health and clinical care systems

1 Background: Evolution of HIEs Health Information Exchanges (HIE) began to evolve in the late 1980s and early 1990s and Community Health Information Networks Early part of 2000s was characterized by rise of isolated Regional Health Information Organizations Integrated Delivery Networks (like Kaiser Permanente and the Dept. of Veterans Affairs) were pioneers in implementing HIE as a means to facilitate continuity of care across multiple care settings within their networks Development of HIEs dramatically accelerated by the American Recovery and Reinvestment Act in 2009, which provided over $600M in funding to facilitate the development of state-based exchanges; activity overseen by HHS Office of the National Coordinator for Health IT (ONC)

2 Background: Clinical Data Collected by HIEs HIEs typically focus on facilitating the exchange of clinical documentation associated with patients Primary content areas include: ­Patient demographics ­Medications ­Diagnoses and Problem Lists ­Allergies ­Clinical encounters and discharge summaries Some HIEs have incorporated laboratory reports and prescription data Imagery data is not commonly exchanged within HIEs yet Some standards exist for encoding clinical data for exchange (e.g. HL7 Continuity of Care Document)

3 Background: Dominant Architectures for HIE Two primary models exist for facilitating the exchange of clinical data within the US, each of which serves different audiences and needs: eHealth Exchange supports large-scale HIE between organizations with IT infrastructure such as hospitals, agencies and IDNs ­Supports a query/response approach to requesting information about individuals and their associated health documents ­Robust security, including authorization and authentication mechanisms ­Typically requires software HIE gateways to store and share health documents DIRECT is a lightweight protocol to facilitate point-to-point exchange of data between health organizations that already trust each other using simpler approaches such as secure ­A “better fax machine” ­Can support the same kinds of clinical data as eHealth Exchange

4 Background: Patient Privacy and Data De-Identification Release of personally identifiable health information in the US is governed by HIPAA, which provides only limited exchanges of this information without prior patient consent (typically for treatment, payment and operations) Use of clinical data stored within HIEs for public health purposes such as biosurveillance typically needs to incorporate data de- identification and/or aggregation to protect patient privacy rights Data de-identification is a balancing act between obscuring enough identifiers to protect privacy while still providing enough information to be of probative value for research and surveillance HIEs must provide a means for patient to opt out of information exchanges, so no HIE has 100% coverage of clinical encounters

5 Potential Applications of HIE Data for Public Health ApplicationDescription Clinical diagnosis reportingClinician diagnoses of health conditions; may be voluntary or mandated, may include chronic diseases Laboratory diagnosis reporting Use of HIEs to replace mail/fax machines to report notifiable conditions from labs to public health authorities Disaster responseUse of HIEs to enable better treatment by responders to major disease outbreaks and/or mass casualty events BiosurveillanceUse of aggregate/de-identified HIE clinical data to detect trends in population health for epidemiology and research Public health alertingUse of HIEs to provide alerts to providers/patients at the point of care of current public health events

6 Discussion What plans has your organization made to incorporate clinical data from health information exchanges into public health reporting and surveillance activities? What public health scenarios are best served through the integration of clinical data from HIEs? What challenges and solutions exist to standardize clinical data for “secondary use” within public health systems? How would public health systems and processes need to be updated to incorporate clinical data from HIEs? How can we ensure that patient privacy rights are protected while providing sufficiently detailed information about clinical encounters to facilitate biosurveillance?