1. MyHealthBits: Personal Health Record Bambang Parmanto Health Information Management Department, University of Pittsburgh

2. Background: Personal Health Record

3. EHR and PHR EHR is provider centric: owned by doctor office, hospital, or an integrated system (e.g UPMC) One patient may have several EHR under control of various orgs (scattered). No one EHR has all the patient info PHR is patient centric. PHR: EHR from providers + personally generated info (daily symptoms, over the counter meds, exercise, diets, health monitoring devices) PHR + Disease & treatment info = active participant of their own healthcare

4. PHR and Consumer Empowerment Benefits: improved patient safety, better health info availability Consumer use health info for decision making Individuals more interested in maintaining their own health record Patients as “Co-Pilot” in their care

5. Perceived Benefits by Patients (Tang, 2006) Timely access to lab test and medical records make patients feel that they have a better picture and more control of their health Results in empowerment and transformation: 1/5 of participants changed their behavior as a result of access to PHR. …. “Because I’ve had ready access to this information, I was able to tailor a diet specifically to adjust my blood lipids… I saw the improved test results two weeks ago….” More connected to providers. Change the dynamic of the care Patients do not abuse the privilege. 92% doctors felt that patients use the service at the expected level

10. Optimal Characteristics of PHR (AMIA White Paper) 1 st : Lifelong and comprehensive 2 nd : Accessible from anyplace anytime 3 rd : Must provide health management tool that helps patients understand the record, along with recommendations to improve their health 4 th : Private and secure 5 th : Patients control the access and how the info is used.

11. MyHealthBits

12. Research Agenda: MyHealthBits Focus Lifelong/longitudinal: Health record for everything: user interface, record management, etc. Design schema that meets standard, but meets user’s needs Personal Managing Personally-generated data Helping users manage their own personal health Communication between patients & providers Email with Provider Videoconferencing with Provider (ConferenceXP) Privacy and patient control: What to share with whom

13. MyHealthBits and MyLifeBits Cannot use the MyLifeBits platform Records/Contents are very different, MLB source code is not available Has to build from the ground up: Platform: MHB is client-server, MLB is local stand-alone Use as many ideas from MyLifeBits Storage/record management Web & Email capture Database: stored procedure Toward an object oriented approach View of the data: time, type

14. Personal Health Records of Everything

15. MyLifeBits: Records of Everything

16. Record View

17. Record View: MyLifeBits

18. Progress Longitudinal/LifeTime Health Record Developing database schema using CCR standard Integrating multimodal data sets in the database Presenting multimodal data sets into a lifeline Personal Capturing and presenting/managing web pages Capturing wearable device: pedometer Personal health record management (mostly static) Communication Capturing videoconferencing (using ConferenceXP) Capturing and presenting/managing email

19. Health Records Personal Information: Personal & Demographic Info Emergency Contact Health Condition: Major Illness & Problem Lists Medication, Allergies Family History Advanced Directive, Care Plan Health History TimeLine: Immunization Lab Tests & Imaging Procedures (Hospitalization & Surgery) Provider Visits Personal Health monitored data (eg., BP, glucose, peak flow ) Healthcare Provider & Insurance Providers, Insurances

20. MyHealthBits

21. Defining Timeframe

22. Selecting Health Record Type

23. Preview

25. Preview: web page

26. Grid View

28. PHR Schema

32. Next Step & Challenges Longitudinal: Tuning the schema: striking a balance between standard & ease of personal use From “document-based” to “health event-based”: I have CT-scan -> what is the diagnosis? Vice versa Richer records Personal “intelligent” record detection/watcher (recognizing that the file is MRI or an email, etc. Capturing more wearable devices Presenting data from wearable devices: data points, documents?? Communication Managing communication records (email, videoconf)