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.
… 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 issues Inform the national eHealth research agenda
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
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 Content Presentation Style Device Psychomotor skills Exposure (dosing) Tradeoffs
Conceptual Frameworks and Models provide the foundation, focus the questions, and guide the design, conduct and interpretation of inquiry Design Setting Sample Variables and Instruments Procedures Analysis Strategies
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 Design Setting Sample Variables and Instruments Procedures Analysis 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 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
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 them Integrating experiential information to generate plausible explanations Promising approaches: Hierarchical linear models Bayesian approaches
Technological Directions
An infrastructure for ehealth
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
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!
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