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?

Stimulating creativity, fostering efficiency

and facilitating experimentation

with new technologies

Tools for research in ehealth

Conceptual frameworks

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

Two roles of conceptual frameworks in ehealth

Guide the design of the intervention

Provide direction for research conduct

Conceptual frameworks as a guide for intervention design

ContentPresentation StyleDevicePsychomotor skillsExposure (dosing)Tradeoffs

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

ehealth --- it’s what’s for dinner!

healthsystems.engr.wisc.edu