democratizing patient data: a story of patient empowerment
TRANSCRIPT
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Democratizing Patient Data: A Story of Patient EmpowermentSession 251, March 8, 2018
Kristina Sheridan, Principal Investigator, The MITRE Corporation
Kate Sheridan, Student, George Mason University
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Kristina Sheridan and Kate Sheridan have no real or apparent conflicts of interest to report.
Conflict of Interest
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Agenda
The Patient Perspective
The Caregiver Perspective
Research to Enable Sustained Patient Empowerment
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Learning Objectives
1. Discuss the barriers preventing clear communication from patients to providers, and describe patient-facing tools and strategies that support bi-directional 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
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Kate Sheridan
Student, Health Administration and Policy
George Mason University
A Patient’s Story
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Healthy to Sick
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Soccer to Wheelchair
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Bi-Directional Communication
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My Identity
Copyright 2016 Kate Sheridan All Rights Reserved© 2018 Kate Sheridan. All rights reserved.
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Whole Patient
© 2018 Kate Sheridan. All rights reserved.
© 2017 Images Source: Kate SheridanNational 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-8015
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More than 3/4 of US
healthcare
dollars are
spent on
their behalf
1Ward BW, Schiller JS, Goodman RA. Multiple chronic conditions among US adults: a 2012 update. Prev Chronic Dis.
2014;11:130389. DOI: http://dx.doi.org/10.5888/pcd11.130389.
Currently, 1/2
of Americans
have at least
one chronic
condition
Not Just Our Story
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Innovation Opportunity
Yet we only spend 1% of health care venture capital on helping
patients manage their own health2
Rising costs Poor Outcomes
1Schneider, Eric C, et al. “Mirror, Mirror 2017: International Comparison Reflects Flaws and Opportunities for Better U.S. Health Care.” Mirror, Mirror 2017: International 2Comparison Reflects Flaws and Opportunities for Better U.S. Health Care, July 2017.
Christensen, C. M., Waldeck, A., & Fogg, R. (2017). The Innovation Health Care Really Needs: Help People Manage Their Own Health. Harvard Business Review3Vahdat, S., Hamzehgardeshi, L., Hessam, S.,&Hamzehgardeshi, Z. (2014). Patient Involvement in Health Care Decision Making: A Review. Iranian Red Crescent
Medical Journal, 16(1), e12454. http://doi.org/10.5812/ircmj.12454
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Empowered
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1 2 3 4
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Kristina Sheridan
Principal Investigator
The MITRE Corporation
A Caregiver’s Story
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Our Solution
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Rocket Science to Health
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Patient
GP
Caregiver
Psychiatrist
NP PT
One-Directional
Communication
Provide
r
Patient
Current State
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Patient
GP
Caregiver
Psychiatrist
NP PT
Bi-Directional
Communication
Provide
r
Patient
Future State
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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 self-
management and eHealth for self-management purposes. BMC Health Service Research. 2016; 1472-6963. DOI:
https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-016-1484-5
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 300-2007. DOI: http://www.sciencedirect.com/science/article/pii/S0738399104002605
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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. http://dx.doi.org/10.1016/j.ijmedinf.2017.01.006
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Patient Workflow
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Capabilities to Empower
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*Prototype
developed for
clinical studies
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Tracking Symptoms
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Tracking Medications
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Appointment Preparation
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Sharing For Action
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Sharing Data
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Barriers to Adoption
[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. doi: 10.1016/j.hjdsi.2013.12.016. 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):624-635. doi:10.1016/j.ijmedinf.2014.06.005.
[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: 152–161. Published online 2013 November 16.
[4] U.S.D.H.H.S. Patient Provider Telehealth Network – Using Telehealth to Improve Chronic Disease Management. 2012 June.
https://www.healthit.gov/sites/default/files/pdf/RCCHCandPHS_CaseStudy.pdf
[1,3]
[3]
[3]
[2]
[4]
[4]
[2,3]
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Mitigate potential barriers to the use of patient empowerment
capabilities in a clinical setting for long-term and sustainable impact
Phase 1
Usability
Test
Phase 2
Formative
Evaluation
Phase 3
Randomized
Clinical Study
Phase 4
Sustainability
Mitigating Barriers
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Usability Test
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Usability Outcomes
Single access to features Legends, Color, Size Simplified reminders
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Study Configuration
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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
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Clinical Study
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
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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. 2014.
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Fee for Service
No Relative Value Unit for Patient Engagement1
20 mins for Chronic Care Management2
Chronic Care Management
Reimburse 20 mins for
Comprehensive Care Plan2
Does not require inclusion of Patient Generated Health
Data (PGHD)
Clinical Quality
Measures
Bi-directional communication not
prioritized
Only one CQM under meaningful use with PGHD,
none in 2016 HEDIS Measures3
ACO Models
Incentivizes patient
communication and patient tools
Adoption of patient-facing tools
limited by size, resources and
location4
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. 2015 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 2016.
3. National Committee for Quality Assurance. “Summary Table of Measures, Product Lines and Changes.” HEDIS 2016, Volume 2.
4. MobiHealth News. In-Depth: ACO’s digital health patient engagement opportunity. July 25, 2014. Available at http://www.mobihealthnews.com/35170/in-depth-acos-digital-health-patient-
engagement-opportunity (Accessed on September 12, 2016)
Sustainability - Incentives
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Sustainability - MACRA
1. Medicare Access and CHIP Reauthorization Act of 2015. 129 Stat. 87.
2. 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. 28161 (May 9, 2016) (to be codified at 42 C.F.R. 414 and 495).
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 patient-generated data
MACRA …moving patients and providers
towards a new paradigm that rewards
patient engagement
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Empowered
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Questions
Kristina SheridanPrincipal Investigator, The MITRE Corporation
@k_sheridan1
https://www.linkedin.com/in/kristina-sheridan-b880168/
Kate SheridanStudent, George Mason University
@kate_sheridan1
https://www.linkedin.com/in/kate-sheridan-62a016127/
Please complete online session evaluation! © 2018 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 18-0189