Democratizing Patient Data: A Story of Patient Empowerment

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1 Democratizing Patient Data: A Story of Patient Empowerment Session 251, March 8, 2018 Kristina Sheridan, Principal Investigator, The MITRE Corporation Kate Sheridan, Student, George Mason University 1

2 Conflict of Interest Kristina Sheridan and Kate Sheridan have no real or apparent conflicts of interest to report. 2

3 Agenda The Patient Perspective The Caregiver Perspective Research to Enable Sustained Patient Empowerment 3

4 Learning Objectives 1. Discuss the barriers preventing clear communication from patients to providers, and describe patient-facing tools and strategies that support bidirectional communication 2. Show how the use of patient-generated health data can improve health outcomes, and discuss how this data can be integrated into the clinical setting 3. Demonstrate, with real-world experiences, how patient-facing tools can be leveraged to engage patients and their caregivers with their health, and empower patients 4. Explain why policies that incentivize the use of patient-generated data, and clinical studies that measure the benefit of this data, are necessary to the availability and use of patient-facing tools 4

A Patient s Story Kate Sheridan Student, Health Administration and Policy George Mason

Whole Patient 2017 Images Source: Kate Sheridan National Institute of Mental Health. (2015). Chronic Illness and Mental Health: Recognizing and Treating Depression[Pamphlet].

14 Whole Patient 2017 Images Source: Kate Sheridan National Institute of Mental Health. (2015). Chronic Illness and Mental Health: Recognizing and Treating Depression[Pamphlet]. Bethesda, MD: Office of Science Policy, Planning, and Communications Science Writing, Press, and Dissemination Branch. Pub ID: NIH 15-MH Kate Sheridan. All rights reserved. 14

RA. Multiple chronic conditions among US adults: a 2012 update. Prev Chronic Dis.

16 Not Just Our Story Currently, 1/2 of Americans have at least one chronic condition More than 3/4 of US healthcare dollars are spent on their behalf 1 Ward BW, Schiller JS, Goodman RA. Multiple chronic conditions among US adults: a 2012 update. Prev Chronic Dis. 2014;11: DOI: Kate Sheridan. All rights reserved. 16

17 Innovation Opportunity Rising costs Poor Outcomes Yet we only spend 1% of health care venture capital on helping patients manage their own health 2 1 Schneider, Eric C, et al. Mirror, Mirror 2017: International Comparison Reflects Flaws and Opportunities for Better U.S. Health Care. Mirror, Mirror 2017: International 2 Comparison Reflects Flaws and Opportunities for Better U.S. Health Care, July Christensen, C. M., Waldeck, A., & Fogg, R. (2017). The Innovation Health Care Really Needs: Help People Manage Their Own Health. Harvard Business Review 3 Vahdat, S., Hamzehgardeshi, L., Hessam, S.,&Hamzehgardeshi, Z. (2014). Patient Involvement in Health Care Decision Making: A Review. Iranian Red Crescent Medical Journal, 16(1), e Kate Sheridan. All rights reserved. 17

19 A Caregiver s Story Kristina Sheridan Principal Investigator The 19

20 Our Solution 2018 Images Source: Kristina Sheridan 20

21 Rocket Science to Health 21

22 Current State Psychiatrist GP One-Directional Communication Patient Caregiver Provide r Patient NP PT 22

23 Future State Psychiatrist GP Bi-Directional Communication Patient Caregiver Provide r Patient NP PT 23

Patient Needs Self-Management Support Bi-Directional Communication ehealth Technology Huygens, M., Vermeulen, J., Swinkels, I., Friele, R., Van Schayck, O., P. de Witte, L.

24 Patient Needs Self-Management Support Bi-Directional Communication ehealth Technology Huygens, M., Vermeulen, J., Swinkels, I., Friele, R., Van Schayck, O., P. de Witte, L., Expectations and needs of patients with a chronic disease towards selfmanagement and ehealth for self-management purposes. BMC Health Service Research. 2016; DOI: Jerant, A., Friederichs-Fitzwater, M., Moore, M. Patints perceived barriers to active self-management of chronic conditions. Patient Education and Counseling. 2005; V 57, Issue 3, Pages DOI: 24

25 Demand and Feasibility Matthew M. Engelhard, Stephen D. Patek, Kristina Sheridan, John C. Lach, Myla D. Goldman. Remotely engaged: Lessons from remote monitoring in multiple sclerosis. International Journal of Medical Informatics. 25

26 Patient Workflow Image Source: MITRE

27 Capabilities to Empower *Prototype developed for clinical studies Image Source: The MITRE Corporation

28 Tracking Symptoms 2018 Image Source: The MITRE Corporation 28

29 Tracking Medications 2018 Image Source: The MITRE Corporation 29

30 Appointment Preparation 2018 Image Source: The MITRE Corporation 30

31 Sharing For Action 2018 Image Source: The MITRE Corporation 31

32 Sharing Data 2018 Image Source: The MITRE Corporation 32

Barriers to Adoption [2,3] [3] [2] [4] [1,3] [4] [3] [1] Moore, S.L. et al. A mobile health infrastructure to support underserved patients with chronic disease. Healthc (Amst). 2014 Mar;2(1):63-8.

33 Barriers to Adoption [2,3] [3] [2] [4] [1,3] [4] [3] [1] Moore, S.L. et al. A mobile health infrastructure to support underserved patients with chronic disease. Healthc (Amst) Mar;2(1):63-8. doi: /j.hjdsi Epub 2014 Feb 5. [2] Fischer SH, David D, Crotty BH, Dierks M, Safran C. Acceptance and Use of Health Information Technology By Community-Dwelling Elders. International journal of medical informatics. 2014;83(9): doi: /j.ijmedinf [3] Jorie M. Butler, Marjorie Carter, Candace Hayden, Bryan Gibson, Charlene Weir, Laverne Snow, Jose Morales, Anne Smith, Kim Bateman, Adi V. Gundlapalli, Matthew Samore. Understanding Adoption of a Personal Health Record in Rural Health Care Clinics: Revealing Barriers and Facilitators of Adoption including Attributions about Potential Patient Portal Users and Self-reported Characteristics of Early Adopting UsersAMIA Annu Symp Proc. 2013; 2013: Published online 2013 November 16. [4] U.S.D.H.H.S. Patient Provider Telehealth Network Using Telehealth to Improve Chronic Disease Management June Image Source: Kristina Sheridan

34 Mitigating Barriers Phase 1 Usability Test Phase 2 Formative Evaluation Phase 3 Randomized Clinical Study Phase 4 Sustainability Mitigate potential barriers to the use of patient empowerment capabilities in a clinical setting for long-term and sustainable impact 34

35 Usability Test 2018 Image Source: The MITRE Corporation 35

36 Usability Outcomes Single access to features Legends, Color, Size Simplified reminders Images Source: The MITRE Corporation

37 Study Configuration 2018 Image Source: The MITRE Corporation 37

38 Formative Evaluation Patient recruitment procedures Internet access and usability concerns Care workflow impact Feedback procedures Patient understanding of features Patient perception of tool and ease-of-use Provider perception of tool and ease-of-use Data collection for analysis 38

39 Clinical Study 2018 Image Source: The MITRE Corporation Measuring impact on: Patient self-efficacy in managing symptoms and medical treatment Patient activation, engagement, and empowerment Health literacy Shared decision-making Patient/provider communication Patient-reported outcomes (patient satisfaction, health status, quality of life) Cost of health care 2017 Image Source: The MITRE Corporation 39

40 Sustainability - Technology Standards for integration of patient-generated data into Electronic Health Record Systems Tools and capabilities to capture the patient voice inside and outside the clinical setting Incentives for the adoption of patient-facing tools and patient-generated data 1. How We View Health Care in America: Consumer and Provider Perspectives. Booz Allen Hamilton and Ipsos Public Affairs

41 Sustainability - Incentives Fee for Service Chronic Care Management Clinical Quality Measures ACO Models No Relative Value Unit for Patient Engagement 1 Reimburse 20 mins for Comprehensive Care Plan 2 Bi-directional communication not prioritized Incentivizes patient communication and patient tools 20 mins for Chronic Care Management 2 Does not require inclusion of Patient Generated Health Data (PGHD) Only one CQM under meaningful use with PGHD, none in 2016 HEDIS Measures 3 Adoption of patient-facing tools limited by size, resources and location 4 1. Andrew M. Ryan, PhD, Stephen M. Shortell, PhD, MPH, MBA, Ratricia P. Ramsay, MPH, Lawrence P. Casalino, MD, PhD. Salary and Quality Compensation for Physician Practices Participating in Accountable Care Organizations. Ann Fam Med July/Aug; 13(4) 2. Department of Health and Human Services, Centers for Medicare and Medicaid Services. Medicare Program; Revisions to Payment Policies under the Physician Fee Schedule and Other Revisions to Part B for CY National Committee for Quality Assurance. Summary Table of Measures, Product Lines and Changes. HEDIS 2016, Volume MobiHealth News. In-Depth: ACO s digital health patient engagement opportunity. July 25, Available at (Accessed on September 12, 2016) 41

42 Sustainability - MACRA Merit-based Incentive Payment System (MIPS) Clinical Practice Improvement Activities Advancing Care Information Quality Cost Alternative Payment Models (APMs) Rewards providers for improving the quality of care Medical Home Model Incentives for use of patientgenerated data MACRA moving patients and providers towards a new paradigm that rewards patient engagement 1. Medicare Access and CHIP Reauthorization Act of Stat Medicare Program; Merit-Based Incentive Payment System (MIPS) and Alternative Payment Model (APM) Incentive Under the Physician Fee Schedule, and Criteria for Physician-Focused Payment Models; Proposed Rule. 81 Fed. Reg (May 9, 2016) (to be codified at 42 C.F.R. 414 and 495). 42

43 Empowered Image Source: Kristina Sheridan

44 Questions Kristina Sheridan Principal Investigator, The MITRE Kate Sheridan Student, George Mason Please complete online session evaluation! 44

2018 The MITRE Corporation. ALL RIGHTS RESERVED. Approved for Public Release; Distribution Unlimited. Case Number

2018 The MITRE Corporation. ALL RIGHTS RESERVED. Approved for Public Release; Distribution Unlimited. Case Number Empowering Patients: Rural Healthcare and Chronic Conditions Session 406, March 7, 2018 Kristina Sheridan, The MITRE Corporation Luz Mahecha-Martinez, MPH, The MITRE Corporation 1 Conflict of Interest