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Information Technology for Patient Empowerment in Healthcare

Book Description

Aims and Scope
Patients are more empowered to shape their own health care today than ever before. Health information technologies are creating new opportunities for patients and families to participate actively in their care, manage their medical problems and improve communication with their healthcare providers. Moreover, health information technologies are enabling healthcare providers to partner with their patients in a bold effort to optimize quality of care, improve health outcomes and transform the healthcare system on the macro-level.
In this book, leading figures discuss the existing needs, challenges and opportunities for improving patient engagement and empowerment through health information technology, mapping out what has been accomplished and what work remains to truly transform the care we deliver and engage patients in their care. Policymakers, healthcare providers and administrators, consultants and industry managers, researchers and students and, not least, patients and their family members should all find value in this book.


"In the exciting period that lies just ahead, more will be needed than simply connecting patients to clinicians, and clinicians to each other. The health care systems that will be most effective in meeting patients' needs will be those that can actually design their 'human wares' around that purpose. This book provides deep insight into how information technology can and will support that redesign."
Thomas H. Lee, MD, MSc, Chief Medical Officer, Press Ganey Associates; Professor of Medicine, Harvard Medical School and Professor of Health Policy and Management, Harvard School of Public Health


The Editors: Drs. Maria Adela Grando, Ronen Rozenblum and David W. Bates are widely recognized professors, researchers and experts in the domain of health information technology, patient engagement and empowerment. Their research, lectures and contributions in these domains have been recognized nationally and internationally. Dr. Grando is affiliated with Arizona State University and the Mayo Clinic, and Drs. Rozenblum and Bates are affiliated with Brigham and Women's Hospital and Harvard University.

Table of Contents

  1. Title Page
  2. Copyright Page
  3. Table of Contents
  4. Preface
  5. About the editors
  6. Introduction
  7. List of contributing authors
  8. Acknowledgements
  9. Part I: Information Technology for Patient Empowerment: 360° Perspectives
    1. 1 Patient-centered healthcare, patient engagement and health information technology: the perfect storm - An integrated perspective from patients, families, clinicians and researchers
      1. 1.1 Background
        1. 1.1.1 Evolution of the traditional clinical encounter into the modern era
      2. 1.2 Patient-centered care and patient engagement
        1. 1.2.1 Definition of terms and concepts
        2. 1.2.2 Why now and why does it matter?
        3. 1.2.3 Where are we now?
      3. 1.3 Health information technology to engage patients
        1. 1.3.1 The impact of patient-facing HIT tools on health outcomes
        2. 1.3.2 Current trends and challenges
      4. 1.4 The perfect storm – transitioning to the future
        1. 1.4.1 The “perfect storm”
        2. 1.4.2 Transitioning from the 21st century to the future
      5. References
    2. 2 Placing patients at the center of patient-centered care: a healthcare provider system perspective of a powerful new technology-enabled “language” - The critical role of secure, two-way patient/clinician connectivity tools in the strategic design, planning and growth of provider organizations
      1. 2.1 Introduction
      2. 2.2 One patient’s story
        1. 2.2.1 The emergency department
        2. 2.2.2 Transformative Features: Connectivity, Care Continuity, Patient Choice
        3. 2.2.3 The Quality Choice clinician visit, and the surgical evaluation
        4. 2.2.4 Transformative features: care coordination, patient-entered-data, care guides
        5. 2.2.5 Surgery, recovery and additional patient services
        6. 2.2.6 Transformative features: organizing a health system based on need, personalized patient services, eResearch
      3. 2.3 Conclusions
      4. References
    3. 3 Using health IT to engage patients in choosing their doctors, health plans and treatments
      1. 3.1 Why choosing a doctor or health plan matters
      2. 3.2 Information to make better healthcare decisions
        1. 3.2.1 Choosing a primary care or specialist physician
        2. 3.2.2 Choosing a health insurance plan
        3. 3.2.3 Choosing a hospital or care facility
        4. 3.2.4 Choosing a treatment
        5. 3.2.5 Common challenges
      3. 3.3 Future opportunities
      4. 3.4 Conclusion
      5. References
    4. 4 Old media to new in health: from information to interactivity
      1. 4.1 Introduction
      2. 4.2 The current situation: needs, gaps and challenges
        1. 4.2.1 New media are fundamentally changing health engagement
        2. 4.2.2 Patient engagement and activation – enabled, but not inevitable
        3. 4.2.3 Patients take on greater financial and clinical roles
        4. 4.2.4 Healthcare organizations want to control the message
        5. 4.2.5 Whom do people trust? Who should they trust?
        6. 4.2.6 Individuals are earlier adopters of new media than the health industry
      3. 4.3 Proposed solutions
        1. 4.3.1 Embrace and personalize transparency
        2. 4.3.2 Patient communities will support self-care and safer care transitions
        3. 4.3.3 Entertain to engage, where appropriate and authentic
        4. 4.3.4 New media can help healthcare move quicker
        5. 4.3.5 New media in healthcare support patient activation
      4. 4.4 Discussion
      5. 4.5 Conclusion
      6. References
    5. 5 Policy context and considerations for patient engagement with health information technology
      1. 5.1 Introduction
        1. 5.1.1 Why do policy makers care about the intersection of patient engagement and Health Information Technology?
      2. 5.2 The current situation: needs, gaps and challenges
        1. 5.2.1 What is the impact of consumerism on patient engagement? Positives and drawbacks?
        2. 5.2.2 What tools can we use to engage patients? How are they furthered or hampered by current policies?
          1. 5.2.2.1 Personal health records (PHR)/patient health portals
          2. 5.2.2.2 Patient-reported outcomes
          3. 5.2.2.3 Team-based care
          4. 5.2.2.4 Telemedicine
          5. 5.2.2.5 Apps/mHealth
          6. 5.2.2.6 Shared decision-making
          7. 5.2.2.7 Promotion of publicly available quality data
      3. 5.3 Future Opportunities
        1. 5.3.1 What does this all mean?
        2. 5.3.2 Policy Reform to Date and in the Future
      4. 5.4 Conclusion
      5. References
  10. Part II: Current and Future Information Technology Solutions for Patient Empowerment
    1. 6 Patient portals can enable provider-patient collaboration and person-centered care
      1. 6.1 Introduction
        1. 6.1.1 Background
        2. 6.1.2 Portals and Patient Engagement and Empowerment
      2. 6.2 Current situation
        1. 6.2.1 Key portal features: interest and evidence
          1. 6.2.1.1 Data access
          2. 6.2.1.2 Receiving patient-generated information
          3. 6.2.1.3 Secure messaging
          4. 6.2.1.4 Interactive Tools
          5. 6.2.1.5 Links to authoritative information
        2. 6.2.2 Problems and challenges with patient portals
      3. 6.3 Addressing patient portal challenges
        1. 6.3.1 Environmental assessments for portals
        2. 6.3.2 User-centered design
        3. 6.3.3 Techniques to create easy-to-understand content
        4. 6.3.4 Patient surveys and other feedback mechanisms
        5. 6.3.5 Technology and policy needs
      4. 6.4 Discussion
      5. 6.5 Conclusions
      6. References
    2. 7 Data model for integrated patient portals
      1. 7.1 Introduction
      2. 7.2 The current situation: needs, gaps and challenges
        1. 7.2.1 Patient information needs and preferences
        2. 7.2.2 Portrait of the breast cancer patient
        3. 7.2.3 Information sources
      3. 7.3 Proposed solutions
        1. 7.3.1 Tailored patient guidelines
        2. 7.3.2 Tailoring content based on user profiles
        3. 7.3.3 Information content via social networking
      4. 7.4 Discussion
      5. 7.5 Conclusion
      6. References
    3. 8 Telehealth: connecting patients with providers in the 21st century
      1. 8.1 Introduction
      2. 8.2 The current situation
      3. 8.3 Proposed solution
      4. 8.4 Discussion
      5. 8.5 Conclusion
      6. References
    4. 9 Patient-controlled sharing of medical imaging data
      1. 9.1 Introduction
      2. 9.2 Current situation – needs, gaps, and challenges
      3. 9.3 Proposed solutions
        1. 9.3.1 The IHE approach
        2. 9.3.2 Cloud-based approaches
        3. 9.3.3 The PCARE approach
          1. 9.3.3.1 Architecture
          2. 9.3.3.2 Card-based user interface
          3. 9.3.3.3 User assessment
      4. 9.4 Discussion
      5. 9.5 Conclusions
      6. Acknowledgements
      7. References
    5. 10 Patient empowerment via technologies for patient-friendly personalized language
      1. 10.1 Introduction
      2. 10.2 The current situation: need, gaps and challenges
      3. 10.3 Proposed solutions
        1. 10.3.1 The CLEFeHealth 2012–2014 shared tasks for patient-friendly, personalized reports
        2. 10.3.2 The SemLink system for patient-friendly, personalized discharge summaries
        3. 10.3.3 The SemAssist system for patient-friendly, personalized discharge summaries
        4. 10.3.4 Related work
      4. 10.4 Conclusion
      5. Acknowledgement
      6. Contributor Statement
      7. References
    6. 11 Finding and understanding medical information online
      1. 11.1 Search in Medicine – Current State and Future Developments
        1. 11.1.1 Introduction
        2. 11.1.2 Searching for health and medical information on the internet: needs, gaps and challenges
          1. 11.1.2.1 The need for better query expression
          2. 11.1.2.2 The need for better information presentation
          3. 11.1.2.3 Modern search challenge
        3. 11.1.3 Proposed solutions
          1. 11.1.3.1 Patient centric solutions
          2. 11.1.3.2 General search engines
          3. 11.1.3.3 Research IQ
          4. 11.1.3.4 IBM Watson
          5. 11.1.3.5 Diagram-based search
      2. 11.2 Discussion
      3. 11.3 Conclusion
      4. References
    7. 12 Electronic media for engaging patients in the research consent decision process
      1. 12.1 Introduction
      2. 12.2 The current situation: needs, gaps and challenges
        1. 12.2.1 Participant’s low literacy and form’s length
        2. 12.2.2 Participant’s desire to have more control over what is shared
        3. 12.2.3 Participant’s interest to know research results
        4. 12.2.4 Attitudes of both medical researchers and participants toward informed consent processes
        5. 12.2.5 Patient autonomy and social forces of influences
      3. 12.3 Proposed solutions
        1. 12.3.1 Participant’s low literacy and form’s length
        2. 12.3.2 Participant’s desire to have more control over what is shared
        3. 12.3.3 Participant’s interest to know research results
        4. 12.3.4 Online health information and its implications for patient autonomy
      4. 12.4 Discussion
      5. 12.5 Conclusion
      6. Acknowledgements
      7. References
    8. 13 Patient engagement at the point of care: technology as an enabler
      1. 13.1 Introduction
      2. 13.2 The current situation: needs, gaps and challenges
        1. 13.2.1 Fundamental needs in patient engagement
        2. 13.2.2 Gaps & challenges
      3. 13.3 Proposed solutions
        1. 13.3.1 Method
        2. 13.3.2 Recruitment, onboarding and interview results
          1. 13.3.2.1 Patient recruitment & onboarding process
          2. 13.3.2.2 Physician interviews: their views on patient engagement
          3. 13.3.2.3 Patient interview results: evidence of engagement at study baseline
        3. 13.3.3 Data collected through Wellby technology
          1. 13.3.3.1 The mobile check-in: daily data reporting by patients
          2. 13.3.3.2 Value to patients of mobile data check-in
          3. 13.3.3.3 Value to the providers
      4. 13.4 Discussion
        1. 13.4.1 Integrating technology-supported patient engagement into a practice
        2. 13.4.2 Patient use of reporting technology
        3. 13.4.3 Future explorations into the value of patient-reported data
      5. 13.5 Conclusion
      6. Acknowledgements
      7. 13.6 Appendix
        1. 13.6.1 Patient barriers interview
        2. 13.6.2 Provider questionnaire
          1. 13.6.2.1 Provider name/title
      8. References
    9. 14 Supporting active patient self-care
      1. 14.1 Introduction
      2. 14.2 The current situation: needs, gaps and challenges
        1. 14.2.1 Health care at distance: a brief history
        2. 14.2.2 Clinical decision-making
      3. 14.3 Proposed solutions: personal smart care-assistants
        1. 14.3.1 Remote patient data collection
        2. 14.3.2 Embedded intelligent models
        3. 14.3.3 Decision-making support
        4. 14.3.4 User interaction
        5. 14.3.5 Application of personal smart care-assistants
          1. 14.3.5.1 Home monitoring of COPD patients
          2. 14.3.5.2 Home monitoring of high-risk pregnant women
      4. 14.4 Discussion
      5. 14.5 Conclusion
      6. Acknowledgement
      7. References
    10. 15 Using patient-reported outcomes to drive patient-centeredcare
      1. 15.1 Introduction
      2. 15.2 The current situation: needs, gaps and challenges
      3. 15.3 Proposed solutions
        1. 15.3.1 Dartmouth-Hitchcock Spine Center: a pioneer in PROMs
        2. 15.3.2 Memorial Sloan-Kettering Cancer Center Urology Clinic
        3. 15.3.3 Partners Healthcare System PROMs Program
      4. 15.4 Discussion
      5. 15.5 Conclusion
      6. References
  11. Index