1. System Standards: PHRs LIS 4776 Advanced Health Informatics Week 4-2 Instructor: Dr. Sanghee Oh College of Communication & Information, Florida State University

2. Announcement EMR Workshop – Michael Peterson – Associate Director/CIO University Health Services – Feb 4 th (Thursday), 2:00 pm – Location: TBA Do not include University Health Services as a medical site for your visit report.

3. Class Presentations Preparation: The speaker shows a clear understanding of the issue in the article and its importance in health IT. (10pt) Content: The show and tell covers an interesting and important issue related to the class weekly topics in health IT. (10pt) Organization: The show and tell is consistently clear, concise, and well-organized. (10pt) Language: Technical terms are well-defined in language appropriate for the target audience. (5pt) Presentation: Nonverbal (eye contact) and verbal skills (enthusiasm, clear voice, elocution) of the presentation are good. (10pt) Timeline: The 5 minute time is well-used for delivering the content. (5pt)

4. Today’s Topic IT Alignment & Strategic Planning (Weeks 2,3 ) – Strategic planning – Records management – IT governance; IT standards System Standards (Week 4,5,6) – PHRs – EHRs – Health websites

5. HIT Presentations Jeffrey Cespedes

6. Overview EMR EHR PHR

7. EMR, HER, & PHR EMR: An electronic record of health-related information on an individual that can be created, gathered, managed, and consulted by ____________________________________________. EHR: An electronic record of health-related information on an individual that conforms to nationally recognized interoperability standards and that can be created, managed, and consulted ____________________________________________. PHR: An electronic record of health-related information on an individual that conforms to nationally recognized interoperability standards and that can be drawn from multiple sources while being managed, shared, and ____________________________________________.

8. __________________________ “A computerized platform for managing ____________________ collected during a hospital stay or in a doctor’s office.” (Connecting for Health 2003) May exist at multiple locations – usually within various physician systems “…the legal record [...] that is the source of data for the EHR.” (Garets and Davis 2006) Data is entered by: health care provider, pharmacy, or insurance company Data is stored by: health care provider, pharmacy, or insurance company

9. ___________________________ A _____________ that incorporates a patient's health care details from all institutions, making it a _____________ reflection of the actual patient experience of receiving healthcare EHR adoption is dependent on the existence of EMRs. (Garets & Davis 2006) Data is entered by: health care provider, pharmacy, insurance company, or labs. Data is stored by: health care provider or insurance company.

10. Personal Health Record (PHR) The personal health record (PHR) is an _____________ of health information needed by individuals to make health decisions. _____________ in the PHR, which comes from healthcare providers and the individual. The PHR is maintained in a secure and private environment, with the individual determining rights of access. T The PHR does not replace the legal record of any provider. (AHIMA, 2004)

11. ePHR Working definition: _____________ to create lists, diaries and journals, along with various software applications to assist in organizing health information around the needs of individuals (National Alliance for Health Information Technology, 2008) An electronic Personal Health Record (“ePHR”) is a _____________, _____________, _____________ for managing relevant health information, promoting health maintenance and assisting with chronic disease management via an interactive, common data set of electronic health information and e-health tools. The ePHR is _____________, _____________, and _____________ by the individual or his or her legal proxy(s) and must be secure to protect the privacy and confidentiality of the health information it contains. It is not a legal record unless so defined and is subject to various legal limitations. (HIMSS, 2007)

12. Personal Health Records by Florida Blue https://www.youtube.com/watch?v=tGTi0VUQSmY

13. This is NOT a new concept A 2004 Harris Interactive poll of 2000 US Adults found that 42% keep PHRs (86% of those respondents use paper records) PHRs

14. (Tang & David 2005; Connecting for Health 2005) 1.Commercially available applications that are ________ (independent) or ________ 2.________ from sources such as health plans or pharmacies 3.________ in a health provider’s EHR system Three primary means to create a PHR

15. Personal Health PH.1Account Holder Profile PH.2Manage Historical Clinical Data And Current State Data PH.3Wellness, Preventive Medicine, and Self Care PH.4Manage Health Education PH.5Account Holder Decision Support PH.6Manage Encounters with Providers Supportive S.1Provider Management S.2Financial Management S.3Administrative Management S.4Other Resource Management Information Infrastructure IN.1Health Record Information Management IN.2Standards Based Interoperability IN.3Security IN.4Auditable Records HL7 Functional Model Functions are categorized and listed hierarchically. (The highest level functions are shown.) Each function has an ID, Name, Statement, Description, Examples, and Conformance Criteria. ________ Source: http://www.hl7.org/documentcenter/public_temp_B6505E3B-1C23-BA17- 0CF26E1F1FB8AE71/calendarofevents/himss/2013/Personal%20Health%20Record%20System%20Functional%20Model.pd f

16. HL7 (Health Level 7) Information interchange/messaging – (http://www.hl7.org/)http://www.hl7.org/ A non-profit standards development organization (SDO) with chapters in 55 countries. The seventh level of the International Organization for Standardization (ISO) model for Open System Interconnection Open source, available for free download HL7’s domain is clinical and administrative data transmission PID||0493575^^^2^ID1||DOE^JOHN^M^^|DOE^JOHN^^^|1948020 3|M||B|254E38ST^^DULUTH^MN^55802 ^USA||(218)625-4359|||

17. PHR Functionality – Ability to enter and edit _____________ information – Ability to make _____________ and receive reminders (wellness) – Ability to _____________ with care provider, reorder prescriptions – Ability to locate “vetted” patient _____________ – Ability to track bills, copays, insurance payments – Ability to review medical records, lab work, discharge summaries – Ability to report _____________ data – Ability to track trends, map data – Ability to use multiple languages and ADA compliant – ** AHIC study in 2006 found that 50% can report outcome data and provide patient educational materials – the rest of the measures were below 30% PHR Functionality

18. PHR Content - Features missing in most PHRs – Advance Directives/Living Will – Free-text Documentation – Home Monitored data – Laboratory Results – EMR imports – RHIO connectivity – Support Groups PHR Functionality

19. Challenges Model PHR Adoption & Usage Awareness Health Literacy EMR Interoperability Trust Perceived Advantage Access Sustainability Certification Consumer Industry Stakeholder Buy In Security/Privacy

20. _____________ : – The first stage of the innovation-decision process: knowledge (Rogers 1995) – 83% had never used a PHR; of those respondents, 52% had not heard of a PHR (AHIMA 2006) _____________ : – Over half of the respondents would most trust “doctor’s to keep online medical records private and secure; Insurers were trusted over the government or a third-party vendor (Markle Foundation 2003; Sprague 2006). Importance of opinion leaders. _____________ : – Digital divide, Senior divide, Technology/Literacy divide – Public libraries, training Consumer Challenges

21. _____________ : – Currently 74% of adults use the Internet. Harris Interactive (2005) – Patients who believe that PHRs offer an advantage over the current medical records system for maintaining health will be the first adopters (Rogers 1995). chronic conditions, taking multiple medications; caregivers, those with children; persons living in areas prone to natural disasters; travelers – Perceived Advantage also linked to Record Comprehensiveness: does the PHR contain all clinical info, from all sources, with all types of data (labs, x-ray, medications, physician notes, etc.) – http://www.eurekalert.org/pub_releases/2014-01/kp- phr010614.php http://www.eurekalert.org/pub_releases/2014-01/kp- phr010614.php – http://www.prweb.com/releases/2014/01/prweb11489115.htm http://www.prweb.com/releases/2014/01/prweb11489115.htm Consumer Challenges

22. _____________ : – Health literacy is “the ability to understand and act on health information” (McCray 2004). – Understanding brings more adoption and usage. – The medical “maze” and the jargon may prevent usage of PHRs even if access is available. – National Assessment of Adult Literacy 2003 survey looked at health literacy Consumer Challenges

23. _____________ : – Time is a significant barrier to using a PHR. – In order to reduce the amount of time the consumer will spend, and further to minimize the potential for data entry error, PHRs should be integrated with EHRs. We anticipate that those individuals offered PHRs which are integrated with EHRs will adopt PHR at higher rates. – Related to Comprehensiveness of Record _____________ : – None exists – CCHIT for EMRs – HL7 Framework being developed Industry Challenges

24. _____________ : – Fee structure – Consumer benefits – Record retention _____________ : – Overcome physician skepticism – Overcome liability (importing data, exporting results) – Insurance companies – Making the case to Consumers Industry Challenges

25. _____________ : – Major concerns for consumers are privacy and security – American Health Information Community (AHIC) workgroup for Confidentiality, Security and Privacy – States collaborate through “State Alliance for E-Health” – HIE Initiatives best practices (through AHIMA) Industry Challenges

26. Report 4: PHR Evaluation While there are numerous Personal Health Record products available, the industry is still at an introduction to growth stage. There are no established standards such as those available with electronic medical records and no agency that certifies the offerings (such as CCHIT ) CCHIT The consumer must rely on their own criteria in choosing a product. Use the criteria provide to evaluate, search for a PHR. You may be able to use the one affiliated with YOUR HEALTH INSURANCE (now is a good time to find out if they have one). http://www.myphr.com/

27. Report 4 Structure This is an individual assignment! Each student MUST evaluate ONE PHR. Write a report that includes: – Overview of the PHR (1 paragraph) – Who is the target consumer (1 paragraph) – Evaluation of the PHR using the 7 listed criteria (a paragraph on each) – Recommendations for improving the PHR (1 page) – Conclusion (2 paragraphs)

28. PHR Evaluation _____________ This refers to the consumer’s ability to access and manage their personal record via the Web. Access also includes minimal accessibility standards defined by the W3C and by federal laws (508 compliance).

29. PHR Evaluation Availability/Access _____________ This refers to the information fields available in the records. The basic PHR should capture, demographics, health behaviors, social history, family health history, allergies, medications, lab results, past medical care, current existing conditions, physician information, insurance information, etc.

30. PHR Evaluation Availability/Access Completeness _____________ Web site has published privacy policy that protects individually identifiable information (no disclosure without consent). Privacy refers to policies that protect the unauthorized secondary usage of information. The PHR should indicate if it meets HIPAA security requirements.

31. PHR Evaluation Availability/Access Completeness Privacy _____________ Usability Portability Vendor reliability This refers to the technical protections available on the system including passwords, authentication mechanisms, secure connections, etc. In an ideal situation, the site should have a consumer-accessible audit log to see who has viewed the information. The site should also provide details of if/when the consumer is notified about breaches of security. Are you aware of the site security through policies and symbols?

32. PHR Evaluation Availability/Access Completeness Privacy Security _____________ This refers to the features available on the site. The PHR should provide the ability for a non-technical or not IT-related individual to easily join, navigate, and enter information. The level of jargon on the site as well as navigation links can influence the perceived usage. A novice user should be able to successfully complete registration, information entry, printing, saving, and information retrieval. Is there help or support available? Is the information presented using “common language” or is it full of jargon (Basically, Can you grandmother understand it? Can someone with a 8 th grade reading level understand it?)

33. PHR Evaluation Availability/Access Completeness Privacy Security Usability _____________ This refers to the consumer’s ability to move records out of the current provider to others. This feature can be both via paper or electronic. Is the information portable – do you have to print it? Can you electronically download any of the information? Can you email the information? Will be the information viewable in any mobile device?

34. PHR Evaluation Availability/Access Completeness Privacy Security Usability Portability _____________ This refers to the reliability and history of the vendor. A new service may not have the ability to continue business operations and has a high chance of closure. Vendors linked to or partnering with sponsoring national organization provide more stability.