Democratizing Patient Data: A Story of Patient Empowerment

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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

© 2018 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 18-0189

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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

© 2018 Kate Sheridan. All rights reserved.

© 2018 Image Source: Kate Sheridan

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The Beginning


© 2018 Image Source: Kristina Sheridan

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Healthy to Sick


© 2018 Images Source: Kristina Sheridan

8© 2018 Kate Sheridan. All rights reserved.

Soccer to Wheelchair


9© 2018 Kate Sheridan. All rights reserved.

High Pain Levels

© 2018 Image Source: Kate Sheridan

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Overwhelmed

© 2018 Kate Sheridan. All rights reserved. © 2018 Image Source: Kate Sheridan

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Bi-Directional Communication

© 2018 Kate Sheridan. All rights reserved.© 2018 Images Source: Kate Sheridan

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Coordinated Care

© 2018 Kate Sheridan. All rights reserved. © 2017 Images Source: Kate Sheridan

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My Identity

Copyright 2016 Kate Sheridan All Rights Reserved© 2018 Kate Sheridan. All rights reserved.

© 2017 Images Source: Kate Sheridan

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Whole Patient


© 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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Emergency Shoes


© 2017 Images Source: Kate Sheridan

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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


http://dx.doi.org/10.5888/pcd11.130389

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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


© 2018 Image Source: Kristina Sheridan

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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


https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-016-1484-5

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

© 2018 Image Source: MITRE


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Capabilities to Empower

© 2018 Image Source: The MITRE Corporation

*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]

© 2018 Image Source: Kristina Sheridan© 2018 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 18-0189

https://www.ncbi.nlm.nih.gov/pubmed/26250090

https://www.healthit.gov/sites/default/files/pdf/RCCHCandPHS_CaseStudy.pdf

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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

© 2018 Images Source: The MITRE Corporation


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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


http://www.mobihealthnews.com/35170/in-depth-acos-digital-health-patient-engagement-opportunity

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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

© 2018 Image Source: Kristina Sheridan© 2018 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 18-0189

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Questions

Kristina SheridanPrincipal Investigator, The MITRE Corporation

[email protected]

@k_sheridan1

https://www.linkedin.com/in/kristina-sheridan-b880168/

Kate SheridanStudent, George Mason University

[email protected]

@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

mailto:[email protected]

https://www.linkedin.com/in/kristina-sheridan-b880168/

mailto:[email protected]

https://www.linkedin.com/in/kate-sheridan-62a016127/

Documents

Democratizing Patient Data: A Story of Patient Empowerment