1. Personal Health Record (PHR) Project Recruiting Doctors & Nurses for Requirements Elicitation Project Manager: Chris Lamer, OIT, IHS Business Analyst: Peter Gordon, Contractor

2. American Recovery and Reinvestment Act of 2009 PHR Definition PERSONAL HEALTH RECORD.—The term ‘‘personal health record’’ means an electronic record of PHR identifiable health information (as defined in section 13407(f)(2)) on an individual that can be drawn from multiple sources and that is managed, shared, and controlled by or primarily for the individual

3. IHS PHR Goals Initiate development and collaborations to create truly consumer-oriented tools for management and portability of personal health information Create a portal to enable patients to access functionality to improve healthcare communication between patients and clinicians and to receive improved access to services and resources

4. Typical PHR Document.[1][1] Personal identification; emergency contacts Contacts for physicians, dentists, & specialists Health insurance information Advanced directives; organ donation information Significant illnesses & surgeries; allergies Medications & dosages; immunizations; lab results Eye & dental records Family history.[2][2] [1][1] Garvin, Jennifer; Odom-Wesley, Barbara; Rudman, William J.; Stewart, Rachelle S. "Healthcare Disparities and the Role of Personal Health Records" Journal of AHIMA (June 2009), web exclusive [2][2] Johns, Merida. Health Information Management Technology: An Applied Approach, second edition. Chicago, IL: AHIMA, 2007. Consumers of Health Care, et al., “The Value of Personal Health Records.”

5. Barriers to PHR Use [3] [3] Greatest PHR Patient Use Problem = Digital Divide Lack of computer access Unfamiliar with the technology PHR use has been negatively correlated with low health literacy & cultural differences Patient’s lack of trust with the use of computer technology for personal health data [3][3] Bagchi, Ann, Lorenzo Moreno, and Raquel af Ursin. “Considerations in Designing Personal Health Records for Underserved Populations.” Mathematica Policy Research Issue Brief, April 2007.“Considerations in Designing Personal Health Records for Underserved Populations.”

6. Benefits of Using PHR Will empower IHS patients to more actively manage their care More healthcare information Easy access to information Discretion to share information with medical staff as desired Provide healthcare providers more patient information Inter-operable with other healthcare information systems

7. IHS PHR Initially focus on cross-cutting functions and chronic conditions Medication management Allergies Laboratory results

8. IHS PHR Team The team developing PHR is now being established and work is beginning Project set-up – staffing, work environment et al Requirements elicitation Prototype development

9. Eliciting IHS PHR Requirements Understanding IHS patients who will use PHR is critical Projects that work closely with end-users usually succeed Projects that don’t usually disappoint We are now establishing a system to elicit requirements for PHR We need the participation of representatives of different stakeholders, including: 1 Primary Care Physician and alternate 1 Nurse and alternate Representatives need to be available to the PHR project team for individual interviews and group sessions Participation is voluntary and in addition to primary duties

10. Desired Characteristics of Representatives Have worked regularly for at least 2 years at an IHS or IHS-sponsored facility Excited about helping develop the IHS PHR Demonstrated strong “track record" of following through on commitments Credibility on medical matters with primary care doctors, nurses, and specialists (including pharmacists) Time available to meet regularly with the project team Monthly demonstrations of PHR prototypes (<2hr) Periodic telephone interviews (0-4 calls monthly) (<30min each) Requirements workshops on as-needed basis Review notes of interviews/meetings (to ensure accuracy of notes) Articulate Respectfully assertive in groups Listens to others Preferably have significant experience using the EHR

11. References 1.Garvin, Jennifer; Odom-Wesley, Barbara; Rudman, William J.; Stewart, Rachelle S. "Healthcare Disparities and the Role of Personal Health Records" Journal of AHIMA (June 2009), web exclusive. 2.Johns, Merida. Health Information Management Technology: An Applied Approach, second edition. Chicago, IL: AHIMA, 2007. Consumers of Health Care, et al., “The Value of Personal Health Records.” 3.Bagchi, Ann, Lorenzo Moreno, and Raquel af Ursin. “Considerations in Designing Personal Health Records for Underserved Populations.” Mathematica Policy Research Issue Brief, April 2007.“Considerations in Designing Personal Health Records for Underserved Populations.”