eHealth Research to Enhance Self-Care and Disease Management: Conceptual, Methodological & Technical Issues Patricia Flatley Brennan, RN, PhD School of Nursing and College of Engineering University 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-Madison Gratitude is also offered to the HealthSystems Lab students, post-doctoral fellows, and faculty associates, and the participants of these research projects.
Transcript
eHealth Research to Enhance Self-Care and Disease Management:Conceptual, 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-Madison
Gratitude is also offered to the HealthSystems Lab students, post-doctoral fellows, and faculty associates, and the participants of these research projects.
… the dinner plate that knows what is on it
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 you’re OK
or red if you must skip dessert!
Objective
Improve the health of the public through better self-help and disease management
Purpose
Accelerate adoption and deployment of eHealth tools Stimulate eHealth research through exploration of conceptual, methodological and technical issuesInform the national eHealth research agenda
Outline
eHealth – what is is, and what it is notKey themes in contemporary eHealth researchConceptual frameworksMethodological challengesTechnological issuesAnd a surprize
What is health care?
Disease
Self Help Self Care Management
Community
Patient
Professional
We think health care occurs here
But health, and much of
health care, happens here
What are we expecting patients to do?
Motivate Monitor Mentor Mend Manage!
The single, most important, personal health
information management tool
in the home…
The current constellation of ehealth applications
for self-care and
disease management
eHealth
Lots of ehealth applications that benefit patients operate ‘behind the scenes’
EHR
Growing acceptance that patients & families should have full access to info
EHR
Maintaining contact with health care
providers and coordinating information
among them is a necessary
but not sufficient
function of ehealth
applications!
Interoperable, useful ehealth tools
EHR
..or a dinner plate that knows what is on it
ehealth is the purposeful application of technology
integrated with professional knowledge and individual talents
designed to achieve health outcomes and accomplish personal goals
It is Not the… device
… web page… infrastructure
… … …
How does research in ehealth get us to this future?
Conceptual Frameworks and Models provide the foundation, focus the questions, and guide the design, conduct and interpretation of inquiry
Desig
nSe
tting
Sam
ple
Varia
bles
and
Inst
rum
ents
Proc
edur
esAn
alys
is S
trat
egie
s
Unanswered questions
Is there a *best* conceptual framework?Can you mix & match design and research frameworks?It’s so early, isn’t it enough just to use and documentation well?
Methodological Challenges
Methodological challenges
Research DesignSettingSample Variables and InstrumentsProceduresAnalysis Strategies
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
Challenges inherent in the setting
Living Environment
Social Environments
Psychological Environments
Technological Environments
Health Services Environments
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
Variables and instrumentsas 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
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?
Analysis challenges
Developing robust analytical approaches and actually getting to implement themIntegrating experiential information to generate plausible explanationsPromising approaches: Hierarchical linear models Bayesian approaches
Technological Directions
An infrastructure for ehealth
Technological Directions
Capitalizing on emerging technologies Characterizing the nature of the interventionSeparating the application from the infrastructureDistinguishing the technical strategy from the therapeutic process
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 isn’t really better, is smaller better? Multi-purpose vs. stand-alone
An agenda for eHealth Research
Conceptual
Methodological
Technical
Clinical
Integrating clinical considerations into the ehealth research agenda
Clinical
An agenda for eHealth Research
Conceptual
Methodological
Technical
Clinical
An agenda for eHealth Research
Conceptual
Conceptual plurality and transparency
Explicit characterization of the intervention and the design
Move beyond the goals of learning towards assisted cognition and patient activation
An agenda for eHealth Research
Methodological
Larger sample sizes
Analytical methods that match the questions
Balance experimentation with exploration
Settings represent a fertile opportunity for discovery
An agenda for eHealth Research
Technical
Greater attention to technologies already underdevelopment but not exploited
Human-centered design the technology should help the person accomplish what they want
Investment in infrastructure
An agenda for eHealth Research
Clinical
Explicit attention to rebalance of clinical work once ehealth is deployed
Alignment with clinical goals -- complementary or compensatory
