1. The Electronic Personal Health Record (ePHR) Beth Friedmann CS - 6125 Spring 2007

2. Consumer Driven Health Record Consumer takes on added responsibility for maintaining personal record Consumer takes on added responsibility for maintaining personal record Consumer participates in creating aspects of the personal health record Consumer participates in creating aspects of the personal health record Journal entries Journal entries Collecting some objective clinical data – eg. BP Collecting some objective clinical data – eg. BP More collaborative More collaborative More “real time” (daily assessment rather than weekly appointments) More “real time” (daily assessment rather than weekly appointments) Improved Collaboration Improved Collaboration Improved Complianc Improved Complianc

3. Information in an ePHR Medical problem list Medical problem list Medical history Medical history Medication Medication Laboratory tests Laboratory tests Family history Family history List of providers List of providers Major illnesses Major illnesses Social history Social history Immunizations Home monitored data such as blood pressure and glucose measures Allergy data Recent hospital admissions Claims data

4. Types of ePHR: Stand Alone Advantages Advantages Stored on a portable drive Stored on a portable drive Responsibility for updating and maintenance can be difficult (Lab, Radiology, physicians and therapists etc.) Responsibility for updating and maintenance can be difficult (Lab, Radiology, physicians and therapists etc.) Disadvantages Disadvantages Update and maintenance can be overwhelming (particularly for someone very ill) Update and maintenance can be overwhelming (particularly for someone very ill) Objectivity and Accuracy Objectivity and Accuracy Still requires access to a chart Still requires access to a chart Difficulty interfacing with other systems Difficulty interfacing with other systems

5. Tethered PHR Often supplied by insurance company or a particular vendor or large health organization (eg. A hospital). Often use a web portal Often supplied by insurance company or a particular vendor or large health organization (eg. A hospital). Often use a web portal Advantages Advantages Cannot lose it (Think VA during Katrina) Cannot lose it (Think VA during Katrina) Maintained by larger organization Maintained by larger organization Disadvantages Disadvantages Silos of information Silos of information Might have multiple ePHRs Might have multiple ePHRs

6. Integrated ePHR Model is based on the Common Framework (Markle Foundation Model is based on the Common Framework (Markle Foundation Sharing of Data across multiple institutions Sharing of Data across multiple institutions For now mostly large institutions, more are coming For now mostly large institutions, more are coming Overcomes interfacing problem Overcomes interfacing problem Data can be centralized, although Common Framework is based on a federated model, SOAP 1.1 and HL7 2.4 Data can be centralized, although Common Framework is based on a federated model, SOAP 1.1 and HL7 2.4

7. Barriers to Adoption Expensive to create and business model is not clear yet Expensive to create and business model is not clear yet Concerns about patient Privacy Concerns about patient Privacy HIPAA HIPAA Identity Theft Identity Theft Conflict of interest for employee or insurance supported PHR Conflict of interest for employee or insurance supported PHR Debates regarding a national patient identifier Debates regarding a national patient identifier

8. Common Framework Sub Networks (SNO) Sub Networks (SNO) Inter SNO Bridge (messaging, authentication etc) Inter SNO Bridge (messaging, authentication etc) RLS – Record locator service (accepts updates and queries) RLS – Record locator service (accepts updates and queries) PHR- Consumer based SNO PHR- Consumer based SNO

9. Advantages of Common Framework Minimum Standards Minimum Standards Goal is to use existing technologies Goal is to use existing technologies Data functions are at application level Data functions are at application level Federated model- data resides with institution Federated model- data resides with institution

10. Query 60 I …

11. Response 60 I …

12. PHR examples

13. Example 2