1. Design of Patient-Centered Care Health IT Patient Advisor involvement in ePHR Design and Outcomes Research Patricia Sodomka, FACHE Senior Vice President, Patient- and Family-Centered Care, MCG Health, Inc. Director, Center for Patient- and Family-Centered Care, Medical College of Georgia AHRQ’s 2008 Annual Conference Promoting Quality – Partnering for Change September 7 – 10, 2008 Bethesda, MD www.CPFCC.org

2. Goals for this Presentation  Overview of ePHR Design Development and Outcomes Research Project  Impact of Patient and Patient Advisor Involvement in e-PHR Research Project  Findings to date “This project was supported by grant number R18HS017234 from the Agency for Healthcare Research and Quality. The content is solely the responsibility of the authors and does not necessarily represent the official views of the Agency for Healthcare Research and Quality.”

3. www.CPFCC.org Who We Are  Health Sciences University for the 34 unit University System of Georgia founded 1828  5 Schools (Medicine, Allied Health, Nursing, Dentistry, Graduate Studies)  Tertiary Academic Medical Center 632 bed facility includes Adult and Children’s hospitals, Ambulatory Care Center, Radiation Therapy Center 110 specialty clinics – Georgia and South Carolina Network of 7 critical access and rural hospital affiliates  21,000 Admissions  508,000 Ambulatory Care Visits

4. www.CPFCC.org Georgia AHA CEO Toolkit Remaking American Medicine

5. www.CPFCC.org

6. “Using an Electronic Personal Health Record to Empower Patients with Hypertension” Examine the feasibility, acceptability, and impact of an ePHR in a population of ambulatory patients with hypertension. “Overall Project Goal” www.CPFCC.org

8. The Essential Role of the Patient Advisor Christine Abbott Lead Patient Advisor – ePHR Study

9. www.CPFCC.org Impact of Patients and Patient Advisors in Research Project on:  Research Methods  Design of PHR  Dialogue with Physicians

10. www.CPFCC.org Project Aims  Incorporate PFCC into the ePHR  Test the effectiveness of the ePHR in hypertensive patients  Measure the impact on system adoption of PFCC

11. www.CPFCC.org The Role That ePHR’s Can Play  Offer the opportunity for patient’s to accumulate and manage their own information, track goals, track progress toward goals, manage meds, coordinate care  Transparency and access to information important features — link to the clinical information system strengthens benefits

12. www.CPFCC.org Aim 1 Modifying our ePHR: My HealthLink  Modifications based on MS study  Modifications based on WAVE 1 and National Advisory input  Final modifications based on WAVE 2  WAVE 1 data collection  National Advisory input  WAVE 2 data collection  Main Trial

13. www.CPFCC.org Aim 2: The Trial 20 physicians 10 Internal Medicine 5 ePHR 180 Intervention Patients (36 per physician) 5 care as usual 180 control patients (36 per physician) 10 Family Medicine 5 ePHR 180 Intervention patients (36 per physician) 5 care as usual 180 Control patients (36 per physician)

14. www.CPFCC.org Outcome Measures  4 visits—every 3 months  Biological measures  BP, BMI, waist circumference  Fasting glucose, triglycerides, HDL, LCL  Patient empowerment measures  Patient activation (PAM)  Patient assessment of chronic illness care  Consumer assessment of healthcare providers and systems

15. www.CPFCC.org Outcome Measures  Patient/Physician Collaboration Measures  Audiotapes of 100 intervention and 100 control visits at initial and 3-month visit Content of communication Taxonomy of requests from patients  Patient Utilization Measures  Self-reported utilization  Electronic abstraction  Adherence to Practice Guidelines  Chart review

16. www.CPFCC.org Initial Findings Wave 1 of Aim 1 15 patients, 9 interviewed Themes developed through iterative process  User Themes  Themes about general ePHR issues  Technology Themes

17. www.CPFCC.org ePHR Aim 1 – Wave 1 - Categorized Themes

18. www.CPFCC.org Initial Findings Wave 1 of Aim 1  7 technology themes identified  40 specific suggestions  Rank ordered suggestions by importance and feasibility through collaborative process including patients

19. www.CPFCC.org Initial Findings Wave 1 of Aim 1  Technology themes included:  Navigation issues  Linkages within and external to PHR  Content corrections  Health tracking  Diary functionality  Expanded medication coverage  Access to PHR data

20. www.CPFCC.org Implementation of Patient Suggestions Wave 28 Main Trial8 Future1 Patient Training4 Ranked Zero11 Not technically feasible7 Policy issue1

21. National Sample Quotes Hypertension Patient Panel “And he talks to me differently because he knows I can click on something and I know about it.” www.CPFCC.org

22. National Sample Quotes Hypertension Patient Panel “We don’t waste a lot of time on history, on how have you been, what have you done? It’s more we had goals and where are you at now with that? How’s this working out? I feel like my 15 minutes is fully packed. Whereas before 10 of it is spent trying to get where we needed to be.” www.CPFCC.org

23. National Sample Quotes Hypertension Patient Panel “In the past, if my labs were off, my primary would call and say I needed to make an appointment…we need to talk. But now, I can see if I need to make a goal before I see him. It makes for a better more productive visit.” www.CPFCC.org

24. Using Patient Advisors in Research Not as subjects, as advisors Different language, different values Especially when designing patient systems Patient perspectives are different than what clinicians, IT workers, or researchers think Clarity increases

25. www.CPFCC.org APPENDIX

26. www.CPFCC.org My HealthLink

27. www.CPFCC.org