Standards and HIT: From the past to the future

1. Standards and HIT:From the past to the future W. Ed Hammond, Ph.D. Professor Emeritus Department of Community and Family Medicine Department of Biomedical Engineering Adjunct Professor, Fuqua School of Business Duke University

2. The past differs from the present … • Technology was the major barrier. • High-speed and ubiquitous connectivity was not available and actually was not a focus. • The need for standards was not a priority. • Applications focused on single domains. • Administrative and accounting needs dominated. • Hospitals got all the attention. • In the clinical world, home-grown systems were the preferred choice. • Little government interest and support for IT. • Little institutional support for IT.

3. The present … • Technology is no longer an issue. • Providers still need convincing; vendors are still very much legacy-oriented. Home-grown is still around. • Still confusion on what we need, who should do it, who should pay for it, and the path we need to take. • Standards are recognized as critical components but still looking for adoption. • Hospitals have good service support; outpatients have little clinical IT. • Sharing is still a dream. There are still business fears about sharing. • Difficult decisions are still difficult.

4. What kind of sharing are we talking about? • When a person moves to another location, their EHR should go with them and be immediately useable. • Transfer EHR between independent sites • To support the multiple sites of care a typical patient uses • Virtual or real summary record with links to sites; likely real time access; RHIOS and NHIN • For patient referrals • Likely to be query-based and/or algorithm driven • Transfers will rarely be everything but a highly focused and purposeful transfer of data.

5. Interoperability is the future • Interoperability based on common data standards is a pre-requisite for the aggregation and sharing of data. • In health care, widespread interoperability opens the door to extraordinary change in areas ranging from high quality care, individual patient safety during treatment, to population safety from epidemics, to the everyday chronic and acute care of millions of citizens, wherever they may be. • But, today, vendor systems are not interoperable, institutional systems are not interoperable, and enterprises are not interoperable

6. Interoperability • Interoperability [IEEE and HL7] • Ability of two or more systems or components to exchange information [functional interoperability] and to use the information that has been exchanged [semantic interoperability] • Interoperability is like the word unique or being pregnant – no adjectives allowed. • Sharing can occur at multiple levels • Human readable (?) form • Document level sharing • Messages • Content • Document images • Free form • Structured

7. Statistics Statistics Statistics Statistics Research Research Research Research Clinical Trials Clinical Trials Clinical Trials Clinical Trials Surveillance EBM EBM EBM Patient Safety Public/PrivatePartnership Quality Low cost Vendor/ProviderPartnership Accessible Analysis Analysis Analysis Analysis Analysis DATA STANDARDS KNOWLEDGE PROCESS Privacy, Security, Trust, Integrity

8. A view of the healthcare world PreventiveCare Acute Care ChronicCare Data Data Data Diagnoses Symptoms Treatment Outcomes Genomic Medicine Normal Concern Abnormal Treatment Control Performance Outpatient Intensive Specialty Emergency Hospital Nursing Homes, etc. Home Care DecisionSupport Decision Support Decision Support

9. Where do standards start? • With the smallest element – the data element • If we define a structured set of any and all data elements that might be contained within an electronic health record, and if • we include precise and unambiguous definitions, data types, units, roles and use, and many other attributes, and if • we define unique value sets for these data elements (single, integrated terminology) • then we can achieve interoperability independently of how these data elements might be packaged for interchange.

10. GENERIC, BROAD USE XML, TCP/IP, Web services, OCL, CCOW, SECURITY, GIS, etc. W3C, IETF, OMG, HL7 others. DATA ELEMENTS RIM, DATA ELEMENTS, DATA TYPES, TERMINOLOGY, TEMPLATES, CDAHL7, CEN, ISO, NCPDP, X12N, IEEE, SNOMED. LOINC, RXNORM, SPL DATA INTERCHANGE Structured&free form documents, images HL7 V2.N AND V3, DICOM, IEEE X73, ASTM, NCPDP, X12n and others KNOWLEDGE REPRESENTATION Guidelines and Protocols, ARDEN SYNTAX, GLIF, GEM, PRODIOGY, PROTIGÉ, vMR, GELLO, othersHL7, ASTM, UK, others ELECTRONIC HEALTH RECORD FUNCTIONAL REQUIREMENTS, CONTENT DATA SETS, EHR MODEL, CCR, TRANSFER EHR, other EHR HL7, ASTM, CEN, openEHR APPLICATION LEVEL SUPPORT IDENTIFIERS, RESOURCE REGISTRIES, TOOL SETS, CONFORMANCE AND IMPLEMENTATION MANUALS HIPAA, HL7, ASTM, ISO, CEN GROUPS OF STANDARDS

11. EHR Interoperability Diagram Derived from master data element registry Billing/Claims Profile EnterpriseData Warehouse PersonalEHR PersonalEHR Profile Disease Registry PatientEncounter Provider EHRDatabase Institution EHRDatabase Disease Registry Profile Disease Registry ResearchDatabase PopulationEHR Profile ResearchDatabase Profile ResearchDatabase

12. Step out of the box • Fix terminologies!! We are so close! • Eliminate local vocabularies and data elements. Mapping is not a solution! • Create a deadline by which all should be using common, structured data. • Adopt modular, growable structures so we can build functionality over time. • Create and use more tools. • Make stakeholder stew. • Don’t compete, at least at the bottom levels. Build the playing field, then compete. • Don’t worry about credit. It’s not NIH, it’s UI. • Create new approaches to research – use interested, geographically-distributed researchers creatively developing tools.