eHealth Research to Enhance Self-Care and Disease Management: Conceptual, Methodological & Technical Issues

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eHealth Research to Enhance Self-Care and
Disease ManagementConceptual, Methodological
Technical Issues

• Patricia Flatley Brennan, RN, PhD
• School of Nursing and College of
  EngineeringUniversity of Wisconsin-Madison
• Support for this presentation and some of the
  research presented here came from the National
  Library of Medicine (LM 6247), the Intel
  Corporation, the Robert Wood Johnson Foundation
  and the Moehlman Bascom Fund, University of
  Wisconsin-MadisonGratitude is also offered to
  the HealthSystems Lab students, post-doctoral
  fellows, and faculty associates, and the
  participants of these research projects.

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imagine...
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the dinner plate that knows what is on it
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Imagine that the dinner plate that knows what is
on it can

• weigh the food
• do a chemical analysis
• use an embedded chip to
• obtain nutritional information from an
  USDA database
• query your health goals recent intake
• flash green if youre OK or red if you must
  skip dessert!

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Objective

• Improve the health of the public through better
  self-help and disease management

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Purpose

• Accelerate adoption and deployment of eHealth
  tools
• Stimulate eHealth research through exploration of
  conceptual, methodological and technical issues
• Inform the national eHealth research agenda

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Outline

• eHealth what is is, and what it is not
• Key themes in contemporary eHealth research
• Conceptual frameworks
• Methodological challenges
• Technological issues
• And a surprize

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What is health care?
Disease Self Help
Self Care Management
eHealth
Patient
Professional
Community
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We think health care occurs here
But health, and much of health care, happens here
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What are we expecting patients to do?

• Motivate
• Monitor
• Mentor
• Mend
• Manage!

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The single, most important, personal health
information management tool in the home
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The current constellation of ehealth applications
for self-care and disease management
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eHealth
SMART Clothing
Health-related web sites
Sensors
Patient Portals
Personal Health Tools
Implantable Devices
PHR's on a stick
Personal Health Records
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Lots of ehealth applications that benefit
patients operate behind the scenes
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Growing acceptance that patients families
should have full access to info
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• Maintaining contact with health care
  providers and coordinating information among them
  is a necessary but not sufficient function of
  ehealth applications!

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Interoperable, useful ehealth tools
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..or a dinner plate that knows what is on it
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ehealth is the purposeful application of
technology integrated with professional
knowledge and individual talents designed to
achieve health outcomes and accomplish
personal goalsIt is Not the device
web page infrastructure
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How does research in ehealth get us to this
future?

• Stimulating creativity,
• fostering efficiency
• and
• facilitating experimentation with new technologies

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Tools for research in ehealth
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Conceptual frameworks
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Key conceptual frameworks models

• Person-focus
• Health Behavior Change
• Learning
• Feedback/control
• Self-efficacy
• Developmental
• Care-delivery focus
• Clinical therapeutics
• Health Services Research
• Public Health
• Technology-focus
• Biomedical Informatics
• Human-computer interaction

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Two roles of conceptual frameworks in ehealth

• Guide the design of the intervention
• Provide direction for research conduct

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Conceptual frameworks as a guide for intervention
design

• Content
• Presentation Style
• Device
• Psychomotor skills
• Exposure (dosing)
• Tradeoffs

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Conceptual Frameworks and Models provide the
foundation, focus the questions, and guide the
design, conduct and interpretation of inquiry
Variables and Instruments
Analysis Strategies
Procedures
Setting
Design
Sample
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Unanswered questions

• Is there a best conceptual framework?
• Can you mix match design and research
  frameworks?
• Its so early, isnt it enough just to use and
  documentation well?

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Methodological Challenges
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Methodological challenges

• Research Design
• Setting
• Sample
• Variables and Instruments
• Procedures
• Analysis Strategies

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Research Design Challenges

• Experimental Quasi-experimental research
  designs
• Achieving experimental control
• Threats to validity
• History
• Unintended of the intervention
• Interpretive and descriptive approaches
• Research as care

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Challenges inherent in the setting

• Living Environment
• Social Environments
• Psychological Environments
• Technological Environments
• Health Services Environments

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Sampling Issues

• Who is the intended user of the ehealth
  application?
• Personal care team vs patient
• Homogeneity of the sample
• Share a common disease process?
• Face similar information management challenges
• Have common developmental goals
• Reaching the sample
• Multiple care providers
• Informed consent for innovative research

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Variables and instruments as appropriate given
the framework and the question

• Characterizing the independent variable --that
  is, just what is the innovation?
• Device
• Personal use of the device
• Content and consequences of the device
• Dependent variables
• Health behaviors, health service utilization,
  health outcomes
• Mediating or moderating variables
• Knowledge, skill, attitude
• Self-efficacy, health literacy, preferences for
  control
• Experience with technology

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Procedural issues

• Demonstrating Efficacy
• Does the innovation do what is intended under
  laboratory conditions?
• Establishing Effectiveness
• Under what conditions can the desired effects be
  produced
• Insuring exposure and integrity of the evaluation
• At a distance, what constitutes a protocol?

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Analysis challenges

• Developing robust analytical approaches and
  actually getting to implement them
• Integrating experiential information to generate
  plausible explanations
• Promising approaches
• Hierarchical linear models
• Bayesian approaches

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Technological Directions
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An infrastructure for ehealth
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Technological Directions

• Capitalizing on emerging technologies
• Characterizing the nature of the intervention
• Separating the application from the
  infrastructure
• Distinguishing the technical strategy from the
  therapeutic process

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Technological research

• Software challenges
• Operationalizing privacy and control
• Can a data element know its privacy status?
• Information integration
• What can visualization teach us?
• Hardware challenges
• Devices
• If bigger isnt really better, is smaller better?
• Multi-purpose vs. stand-alone

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An agenda for eHealth Research
Methodological
Conceptual
Clinical
Technical
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Integrating clinical considerations into the
ehealth research agenda
Clinical
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An agenda for eHealth Research
Methodological
Conceptual
Clinical
Technical
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An agenda for eHealth Research
Conceptual plurality and transparencyExplici
t characterization of the intervention and
the design Move beyond the goals of learning
towards assisted cognition and patient
activation
Conceptual
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An agenda for eHealth Research
Larger sample sizes Analytical methods that
match the questions Balance experimentation
with exploration Settings represent a fertile
opportunity for discovery
Methodological
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An agenda for eHealth Research
Greater attention to technologies already
underdevelopment but not exploitedHuman-cent
ered design the technology should help
the person accomplish what they
want Investment in infrastructure
Technical
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An agenda for eHealth Research
Explicit attention to rebalance of clinical
work once ehealth is deployed Alignment with
clinical goals -- complementary or
compensatory
Clinical
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ehealth --- its whats for dinner!
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