Use of Mobile Health Technology to Inform on End-of-Life (EOL) Public Health Intervention Open Access

Mallay, Shahidah (2017)

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Introduction: Currently, the U.S. population is using mobile health applications to capture real-time health data on things like chronic diseases, nutrition, and fitness. However, there is uncertainty about the current rate of usage on apps for end-of-life (EOL) care.

Many Americans are adapting to EOL planning due to an increase in life expectancy by some 30 years. In such a technologically advanced age, there is, therefore, great potential for use of EOL apps. Use of this technology can contribute largely to gathering EOL data aimed at informing on specific public health interventions such as: improved communication between health care providers, patients, and family members about EOL. Using EOL application to gather such data requires data sharing between the app and components of the Electronic Health Record (EHR) system. Data sharing between these systems necessitates interoperability standards and compatibility, while adhering to the privacy and security standards set by the U.S. healthcare system.

Background: While there are existing challenges with privacy, security and integrative use of EOL mHealth applications, there is great potential to improve interventions for EOL care planning that will make a difference for millions of Americans. This project, therefore, demonstrates how a new mHealth app (LifeSynergy) could potentially improve data sharing of EOL documents across time, settings and healthcare providers, and how data from this app can be used to inform on EOL public health interventions.

Objective: This project-based thesis develops a prototype for the "LifeSynergy" app, which has potential to improve electronic access to EOL documents, and facilitate sharing of EOL preferences and health information between patients, family members and providers. The project was achieved by collecting data from multiple sources including key stakeholder interviews, literature review, EOL apps analysis, and the design of two detailed interoperability process flow diagrams.

Conclusion: The creation of the LifeSynergy prototype provides visual insight to how this app will function to collect EOL data, and integrate with EHR (Patient Portal) systems. Once implemented, LifeSynergy will have the potential to garner key clinical, policy and public health implications that affords great benefit to public health. Healthcare providers having immediate access to EOL documents is key to improving patient-centered care, as this will help them understand precisely the type of treatment their patients desire, and also remove the burden from family members having to make these critical and often very difficult life decisions.

Table of Contents

Chapter 1 ... 1 Introduction ... 1 What is Mobile Health? ... 2 mHealth for End-of-Life (EOL) Care ... 3

The Impact of Advanced Care Plan on Patients, Health, Health Care and Public Health ... 5

Disparities in End-of-Life Care Planning ... 6 Technical Considerations for EOL Technology ... 7 Interoperability ... 7 Privacy and Security for Mobile Health Technologies ... 9 Conclusion ... 10 Problem Statement ... 11 Purpose Statement ... 11 Specific Aims ... 11 Definition of Terms: ... 12 Chapter 2: Methodology ... 14 Introduction ... 14

Interviews to Determine Current Usage of End-of-Life Mobile Apps in Healthcare Facilities ... 14

Systematic Review to Develop Mobile App Rating Scale on Existing End-of-Life Apps ... 16

Understanding the Interoperability Process - Integrating with EHR systems ... 18

Capturing the Requirements - User Stories and Functional Requirements ... 20

Summary 22 Chapter 4: Discussion ... 42 Introduction ... 42 Summary of Project ... 42 Implications ... 44 Clinical Implications ... 44 Policy Implications ... 45 Public Health Implications ... 46 Project Strengths ... 46 Limitations ... 47 Skewing the EOL App Usability Search ... 47 App Analysis Restrictions ... 48 More Advanced Technical Skills Needed for Testing ... 48 Next Steps ... 49 All Cost and Language Inclusion in Future Research ... 49 Technological Advancement 49 Recommendations ... 50 English Only Apps - Available in Multiple Languages ... 50 Repository for Providers ... 51 Education and Awareness ... 51 Community Support ... 52 Conclusion ... 52 Appendix ... 60 References ... 61

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