1. Personal Health Records: Past and Future Directions, In Two Acts Clement J. McDonald, MD James J. Cimino, MD Lister Hill National Center for Biomedical Communications National Library of Medicine

2. No Relevant Financial Relationships with Commercial Interests James J. Cimino, M.D.

3. Learning Objectives – Act I 1.An introduction to consumer access to health information, including their own personal health data 2.Familiarity with a sample of typical consumer-oriented health information sites 3.Demonstration of some of the early experiments with patient health records

4. Motivators Patient self-help/self-care Patient autonomy Coordination of care Health insurance - patient as case manager

5. What's New? Ability to interface with remote systems Common user environment Platform independence Internet culture Critical mass effect

6. What Do Consumers Want? Access to health information Help in finding a caregiver Purchasing power Community Access for providers Access to their own records –monitor –understand –contribute

7. Mayo Clinic: www.mayohealth.org

8. Virtual Hospital: www.vh.org

9. HMO: www.oxhp.com

10. WebMD: www.webmd.com

11. NLM Gateway: gateway.nlm.nih.gov/gw/Cmd

12. MedlinePlus: www.nlm.nih.gov/medlineplus

13. Healthfinder: www.healthfinder.gov

14. CDC Preventive Guidelines: www.cdc.gov

15. Buy Cipro: www.online-prescriptiondrugs.com/cipro.shtml

16. Issues Privacy and confidentiality Quality of health information (credentialing)

17. Zapper: www.drclark.net/disease/zapper.htm

20. Health on the Net Code of Conduct (HONcode) Authority (authors) Complementarity (support, not replace) Privacy (respect personal data) Attribution (source of published information) Justifiability (back up claims) Transparency (of authorship) Financial disclosure (funding source) Advertising policy (distinguish ads from content)

21. Health on the Net: www.hnot.ch

22. Issues Understanding health information Privacy and confidentiality Quality of health information (credentialing)

23. The 5-year overall survival, cause-specific survival, local recurrence-free survival and disease-free survival rates were 97.3%, 98.4%, 98.1%, and 91.5%, respectively. breast cancer survival

24. Issues Understanding their records Patient relations with care givers Have-nots Accuracy of data contributions Privacy and confidentiality Quality of health information (credentialing) Understanding health information

26. Issues Privacy and confidentiality Quality of health information (credentialing) Understanding health information Understanding their records Patient relations with care givers Have-nots Accuracy of data contributions

27. Some Examples of Past Systems Patient Centered Access to Secure to Secure Systems Online (PCASSO) Patient Clinical Information System (PatCIS)

44. Some Examples of Past Systems Patient Centered Access to Secure to Secure Systems Online (PCASSO) Patient Clinical Information System (PatCIS) MyHealthAtVanderbilt

45. MyHealthAtVanderbilt: www.myhealthatvanderbilt.com/myhealth-portal/app

51. Some Examples of Past Systems Patient Centered Access to Secure to Secure Systems Online (PCASSO) Patient Clinical Information System (PatCIS) MyHealthAtVanderbilt

52. HealthVault: www.healthvault.com

53. Google Health: www.google.com/health/p/

54. Patient Portal Informatics Issues What are the patient information needs? How do patients understand? How do patients contribute? How do we evaluate the impact and value?