1. Darren A. DeWalt, MD, MPH Division of General Internal Medicine Maihan B. Vu, Dr.PH, MPH Center for Health Promotion and Disease Prevention University of North Carolina at Chapel Hill Integrating Patient and Physician Voices to Optimize Design of Self- Management Tools

2. Overall Goal Figure out what patients and providers want from all of this data How can they use it to advance self- management, patient-physician communication, and clinical decision making? Design and test a prototype system Many representatives across this project will need to engage with us in this work

3. Darren DeWalt, MD, MPH Current Role Associate Director for Ambulatory Care, UNC Institute for Healthcare Quality Improvement Section Chief for Research, Division of General Medicine and Clinical Epidemiology Associate Professor Medicine Areas of Expertise Development and validation of patient reported outcome measures: Principal Investigator for the UNC site of the Patient Reported Outcomes Measurement Information System for 9 years. Health Literacy: Several observation and intervention studies to improve self- management and health outcomes for patients with low health literacy (heart failure, diabetes, COPD, asthma, hypertension) Integration of qualitative research findings into PRO assessment and intervention design Quality Improvement: designing and supporting quality improvement efforts in ambulatory care and regional improvement efforts

4. Maihan B. Vu, Dr.PH, MPH Current Role Director of Formative Research, UNC Center for Health Promotion and Disease Prevention Director, Qualitative Research Unit Adjunct Assistant Professor of Health Behavior, Gillings School of Global Public Health Member of the “M.O.B.” Training and Experience Almost 20 years of research experience in qualitative research methods and public health program evaluation Direct various formative and process evaluation components for numerous multi-site CDC and NIH studies Expertise in design and conduct of interviews and focus groups: diverse populations, broad range of health issues, practice and community based settings For this Project Engagement: Worked with hundreds of providers, patients and families in rural and urban NC Partnership: Build relationships with researchers, stakeholders, and participants to conduct “real world” research Development and Testing: Integrate patient and provider voices in design of self management tools

5. Purpose Develop tools that: 1.Utilize integrated patient reported data to increase communication between patients and health care providers 2.Let patients visualize their own data to make observations about their own health, and factors that affect this. (i.e. identify correlations between exercise, diet, adherence, and outcomes they prioritize)

6. Work Plan Overview Phase 1 Planning and Development Phase Phase 2 Qualitative Research Assessments Individual Interviews with Patients and Providers Phase 3 Develop Prototype Cognitive Interviews with Patients and Providers

7. Phase 1: 1. Review current tools available by collaborators on project How are they used? What has been done to integrate them so far?

8. Phase 1: 2. Determine initial vision of collaborators What tools are needed and how will they enhance self-management and interactions with the health system?

9. Phase 1: 3. Develop plan of where this might go Development Team Timeline for work scope

10. Phase 1: 4. Review any prior qualitative work done PRO selection Other self-management

11. Phase 2: 1. Begin qualitative assessments with patients Patient Interviews (total of 20 interviews) Goal: to understand patient needs, develop interview protocol including review of current practice, patient wish list, what PROs are most important to their lives and to communicate with clinicians, present prototype/ideas to get feedback

12. Sampling Patients Want to ensure inclusion of representative groups Candidate groups: – Young v. old – Race/ethnic representation – UC v. Crohn’s – Socioeconomic status – Device use (desktop v. phone) – Current CCFA participants v. unaffiliated Suggest at least 5 from each group (overlap is ok)

13. Phase 2: 2. Begin qualitative assessments providers Provider Interviews (total of 20 interviews) Goal: prototype development, recommendations for making patient portals most useful in clinical settings, and impact on care delivery. Plans for qualitative analysis and data integration

14. Sampling Physicians Want to ensure inclusion of representative groups Candidate groups: – Specialist v primary care (maybe only specialist?) – Academic v. private practice – Young v. old – Others? Suggest at least 5 from each group (overlap is ok)

15. Phase 3: 1. Develop prototype tool Feed qualitative results back into design plans Identify key partners in developing the prototype tool Which co-investigators will be developing the actual technology?

16. Phase 3: 2. Qualitative Feedback on Prototype Another iteration of qualitative assessment on prototypes Cognitive interviews with patients and clinicians from the PPRN. Focus groups will also be conducted to guide expansion efforts, particularly in minority populations

17. Result Understand the patient voice and needs from data and PRO monitoring Enhance value of CCFA Partners participation for patients and providers Advance ability to engage patients and providers to grow the network Have tested prototype ready for next phase of research and implementation