Personal health records (PHRs) have the potential to improve health outcomes but face challenges regarding interoperability, security, and privacy. PHRs could allow individuals to manage their own healthcare by communicating with providers and accessing health information. However, PHRs currently lack standardization and the ability to exchange information between different systems. Addressing issues such as determining security protocols, exchanging data between health information exchanges, and clarifying legal policies will help realize the full benefits of PHRs. Widespread adoption also requires resolving questions over who pays for and controls PHR data. Further research is needed to understand how to best design PHRs and incentivize their use.

1. Personal Health Records Hari Mitra, Robert Reza, Kristin Do, Melvin Young

2. Ideally, what is a PHR system? Contains comprehensive individual clinical data. Capable of population via EHRs Includes the ability to communicate with providers, schedule appointments, renew prescriptions and health plan benefits Control on access to data

3. Why are PHRs an important area of study? PHRs are not standardized Due to different sources of information and different features, there’s a lack of interoperability This is exacerbated by the current state of technological innovation and lack of policy guidelines Without interoperability between information sources (HIEs) the potential of PHRs will remain unknown In order to be used properly, security standards must be determined This is doubly true if the PHR system is internet accessible

4. Why are PHRs an important area of study? The potential for improved health outcomes. Some of these include Consumers would be more involved with their own health care and form stronger physician-patient relationships Providers would have improved decision making, and have less avoidable medical errors Payers would save costs from avoiding duplicate tests Overall population health improvement

5. Highlights of Study Government National Committee on Vital and Health Statistics National health information infrastructure requires data to support the needs of patient care, population health, and personal health. Requires individuals managing their own wellness and healthcare decision making Includes a PHR that is created and controlled by the individual or family Includes information and tools such as health status reports, self-care trackers and directories of health care and public health service providers.

6. Highlights of Study

7. Highlights of Study Journal of the American Medical Informatics Association – Author: Shane Reti “that no one knew what everyone else was doing, that PHRs were being developed in silos and that the good and not so good experiences were not being shared in the environment” Commercial leading PHRs products such as Google Health and Microsoft Heath vault are not HIPAA covered "are able to be more creative and move quicker because they don't require the same sign offs and double checks of HIPAA" PHRs are not currently patient centered because of technical issues of information processing. “overwhelming non-relevant information that was being fed into it from claims data”

8. Key Findings According to the National Committee on Vital and Health Statistics: Identifying potential liabilities, rights and obligations of consumers, providers, patients and other stakeholders in PHR systems is critical Those who use PHR systems should have the right to make an informed choice based upon the uses of their personal health information Security is one of the most crucial issues, especially when involving the internet The full potential of PHRs will not be realized until EHRs are fully adopted and HIEs are developed allowing for exchange

9. Key Findings Privacy is a big issue and gauging the public’s attitude towards sharing their personal health information is important According to the study - Sharing Medical Data for Health Research: The Early Personal Health Record Experience it was found that: Of all the participants 91% were agreeable to sharing their information for the purposes of research Also of the total participating 90% agreed to participate when they could do so anonymously

10. Key Findings The demand for PHRs has been increasing more and more, but security and control of information continue to be issues According to the study “Early Experiences with Personal Health Records” the shortcomings that need to be addressed for the future of PHRs are: Interoperability Knowledge bases within the PHRs Patient control of their health information Clinical Trials Chronic Disease Communities Access to information

11. Key Findings The development of completely functional PHRs can lead the way to creating effective HIEs in the near future According to the study “Personal Health Records: Definitions, Benefits, and Strategies for Overcoming Barriers to Adoption” issues that must be addressed are: Who pays for PHRs? There is a need for “lay” terminology due to different levels of medical knowledge The lack of successful PHR business models could limit widespread use

13. More accurate health info. on patients

14. Ad Hoc Information in emergency situations

15. Access on mobile devices

16. Condition Tracking

17. For patient- get an idea of how they are doing

18. For physician- get alerts on critical patients

19. Offer education/ support groups

20. Facebook-like ads for education

22. Identify: who uses, at what frequency, what purpose, and what the impacts to patient personal activity and health are?

23. Which conditions are PHR most beneficial?

24. What data should be in PHRs?

25. Patient data reliability

26. Adoption

27. What platforms work best?

28. Are monetary incentives affective for expansion of PHRs?

29. Would teaching PHR/EHRs in school spread adoption?

30. Privacy/Storing PHRs

31. Who should store/protect all this data?

32. What protections should be in place to verify end users?

33. Who should have access other than the patient?

34. Who should pay for this?

35. Interoperability

37. Conclusion Personal health records are necessary to increase the quality of health care Lead to effective HIE adoption Need to move from location-based patient data to patient-controlled data All patient data should be gathered and accessible through one system Many issues regarding PHR implementation Privacy Interoperability Market-based health care

38. References Personal Health Records and Personal Health Record Systems: A Report and Recommendations from the National Committee on Vital and Health Statistics http://www.ncvhs.hhs.gov/0602nhiirpt.pdf Improving personal health records for patient-centered care http://jamia.bmj.com/content/17/2/192.abstract Halamka, Mandl, Tang. Early Experiences with Personal Health Records. Journal of the American Medical Informatics Association Volume 15 Number 1 Jan / Feb 2008. Personal Health Records: Definitions, Benefits, and Strategies for Overcoming Barriers to Adoption. Journal of the American Medical Informatics Association. Volume 13 Number 2Mar / Apr 2006. Daniel, J.; Posnack, S.; Personal Health Record Website Inventory, Analyses, and Findings. Consumer Education and Engagement Collaborative, Massachusetts (2009). Tang, P. C., Ash, J. S., Bates, D. W., Overhage, J. M., & Sands, D. Z. (2006). Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption. J Am Med Inform Assoc, 13(2), 121-126. Grossman, Joy M., Zayas-Cabán, Teresa, Kemper, Nicole. Information Gap: Can Health Insurer Personal Health Records Meet Patients' And Physicians' Needs? Health Affairs; Mar/Apr2009, Vol. 28 Issue 2, p377-389, 13p.