1. 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.

3. … the dinner plate that knows what is on it

4. 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!

6. Objective Improve the health of the public through better self-help and disease management

7. 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

8. 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

9. What is health care? Disease Self Help Self Care Management Community Patient Professional

10. We think health care occurs here But health, and much of health care, happens here

11. What are we expecting patients to do? Motivate Monitor Mentor Mend Manage!

12. The single, most important, personal health information management tool in the home…

13. The current constellation of ehealth applications for self-care and disease management

14. eHealth

16. Lots of ehealth applications that benefit patients operate ‘behind the scenes’ EHR

17. Growing acceptance that patients & families should have full access to info EHR

18. Maintaining contact with health care providers and coordinating information among them is a necessary but not sufficient function of ehealth applications!

19. Interoperable, useful ehealth tools EHR

20. ..or a dinner plate that knows what is on it

21. 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 ………

22. How does research in ehealth get us to this future? Stimulating creativity, fostering efficiency and facilitating experimentation with new technologies

23. Tools for research in ehealth

24. Conceptual frameworks

25. 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

26. Two roles of conceptual frameworks in ehealth Guide the design of the intervention Provide direction for research conduct

27. Conceptual frameworks as a guide for intervention design Content Presentation Style Device Psychomotor skills Exposure (dosing) Tradeoffs

28. 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

29. 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?

30. Methodological Challenges

31. Methodological challenges Research Design Setting Sample Variables and Instruments Procedures Analysis Strategies

32. 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

33. Challenges inherent in the setting Living Environment Social Environments Psychological Environments Technological Environments Health Services Environments

35. 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

36. 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

37. 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?

38. 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

39. Technological Directions

40. An infrastructure for ehealth

41. 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

42. 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

43. An agenda for eHealth Research Conceptual Methodological Technical Clinical

44. Integrating clinical considerations into the ehealth research agenda Clinical

45. An agenda for eHealth Research Conceptual Methodological Technical Clinical

46. 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

47. 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

48. 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

49. An agenda for eHealth Research Clinical Explicit attention to rebalance of clinical work once ehealth is deployed Alignment with clinical goals -- complementary or compensatory

50. ehealth --- it’s what’s for dinner!

51. healthsystems.engr.wisc.edu