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

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 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.

2. imagine...

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 eHealth Patient Professional Community

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. SMART Clothing Health-related web sites Sensors Patient Portals eHealth Personal Health Tools Implantable Devices PHR's on a stick Personal Health Records

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

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

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

19. EHR Interoperable, useful ehealth tools

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

21. ehealth is the purposeful application of technologyintegrated with professional knowledge and individual talentsdesigned to achieve health outcomes and accomplish personalgoalsIt 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 Variables and Instruments Analysis Strategies Procedures Setting Design Sample

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 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

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 Methodological Conceptual Clinical Technical

44. Integrating clinical considerations into the ehealth research agenda Clinical

45. An agenda for eHealth Research Methodological Conceptual Clinical Technical

46. An agenda for eHealth Research Conceptual plurality and transparencyExplicit characterization of the intervention and the design Move beyond the goals of learning towards assisted cognition and patient activation Conceptual

47. 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

48. An agenda for eHealth Research Greater attention to technologies already underdevelopment but not exploitedHuman-centered design the technology should help the person accomplish what they want Investment in infrastructure Technical

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

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