PHRs, PHIM, and Pts: Engaging people in health and health care

1. PHRs, PHIM, and Pts: Engaging people in health and health care Patricia Flatley Brennan, RN, PhD University of Wisconsin-Madison

2. Madison, Wisconsin

3. Plan for today 1.  Characterize tools, behaviors and actors engaged in health promotion, disease management and care processes 2. Illustrate the personal health management infrastructure with examples from Project HealthDesign 3.  Identify research, engineering and policy considerations to accelerate better health & health care through technology-enhanced patient centered care

4. PHRs

5. PHRs …(an Internet-based) set of tools that allows people to access and coordinate their life-long health information and make appropriate parts of it available to those who need it. Personal Health Records Working Group, Markle Foundation, 2003

6. PHIM

7. PHIM …a set of self-selected, purposeful strategies and tools, employed to capture, store, retrieve and act on information in support of health

8. Pts

9. Pts

10. Pts …not a diminutive, but a person who actively seeks or benefits from the knowledge and services of health professionals … and often, not alone!

11. The challenge of personal health information management • Clinical encounters with > 4 providers a year • Recalling what happened when and with whom • Sorting information from > 10 sources • Patient-net: patients as an information intermediary • Health@Home, 2002

12. How do people manage health information ? • Lay people develop robust to manage health information • Advantages • Easy to use, portable • Problems: • Not scalable • Not transferable • Not actionable

13. Welcome MyChart User PERSONAL HEALTH RECORDS: The key to PHIM • Tethered • To health care providers • To Payors • To suppliers • Untethered • Portals • PCs & Apps

14. Components of a personal health information system Self-Monitoring

15. Components of a personal health information system Self-Monitoring Decision Support

16. Components of a personal health information system Self-Monitoring Decision Support Communication

17. Components of a personal health information system Clinical Records Self-Monitoring Decision Support Communication

18. Why would people use tools for personal health information management? • To understand their own health patterns

19. Why would people use tools for personal health information management? • To understand their own health patterns • To have a single point of access to health data

20. Why would people use tools for personal health information management? • To understand their own health patterns • To have a single point of access to health data • To bring the every-day health experience into the clinical encounter

21. Why would people use tools for personal health information management? • To understand their own health patterns • To have a single point of access to health data • To bring the every-day health experience into the clinical encounter • To get guidance and direction in day-to-day living

22. Why would people use tools for personal health information management? • To understand their own health patterns • To have a single point of access to health data • To bring the every-day health experience into the clinical encounter • To get guidance and direction in day-to-day living • To help one clinician know what the other one is doing

23. Why would people use tools for personal health information management? • To understand their own health patterns • To have a single point of access to health data • To bring the every-day health experience into the clinical encounter • To get guidance and direction in day-to-day living • To help one clinician know what the other one is doing Action

24. Colorado Care Tablet Clarence

26. Next Generation PHRs: from data to action Create personal health information management tools that go beyond repositories of information to dynamic, interactive applications that are a seamless and integral part of daily life

27. Project HealthDesign

28. Project HealthDesign • 14 interdisciplinary teams working collaboratively in two phases • Design user-centered PHR applications • Operate on a common technology platform • Explore ethical, legal and social issues • Characterize data from the person perspective • Evaluate the impact on clinical workflow and patient outcomes

29. Project HealthDesign: What we’ve learned so far! • Collecting ‘observations of daily living’ may be the most important aspect of PHIM! • ODLs are information that is collected and reported by the patient • sleep, diet, exercise, mood, adherence to medications • important to health, but not collected in a clinical setting • Intense engagement with people, family caregivers and clinicians provided important feedback on what kind of ODLs people want to share and how it affects how they feel

30. Project HealthDesign: What we’ve learned so far! • People don’t live from clinical episode • to clinical episode ~ they manage their health every day • Frequent recording of ODLs empower patients to: • create a more meaningful portrait of their health • Understand and shape daily health decisions • facilitate more productive conversations • with clinicians

31. Project HealthDesign: What we’ve learned so far! • A common technology platform applications accelerates development, interoperability and improves security • Project HealthDesign developed the Common Platform • a common technical platform can support a variety of personal health application tools  • “centralizing” common functions reduces implementation time and increases interoperability among personal health applications • Data can be stored once, used by multiple applications • Data and apps stand apart!

32. Project HealthDesign: What we’ve learned so far! • Users’ ethical, legal, and social concerns about PHIM technologies & information • are real, but surmountable • Top three overarching ELSI concerns • Control over access to information • managing privacy rights • shifting shared decision-making to the user • Top Legal Concerns • State-level laws governing data sharing • Mobile Platforms as clinical tools • Clinician protection for use of patient-generated data

33. Effective PHRs are not about the record, they’re about the action they achieve • TRUE Research Foundation and the Diabetes Institute at Walter Reed Army Medical Center • A diabetes self-management application that captures and analyzes data and communicates key information cell phones • University of Colorado at Denver and Health Sciences Center A portable touch-screen computer for older patients or their caregivers to better manage their medications at home • University of California, San Francisco • An integrated calendar with details of breast cancer patients’ treatment and personal schedules to better understand their treatment and proactively coordinate their care

34. PHIMs operate well beyond the PC The University of Rochester A computerized “conversational assistant” that provides patients with heart disease a “daily check-up” University of Washington A system that allows people with diabetes to record their blood glucose levels, blood pressure, food intake and exercise levels and quickly upload these readings wirelessly over a cell phone to their clinicians Vanderbilt University An application for children with cystic fibrosis and their caretakers to track medications, alert parents when doses have been taken, manage refills, and more. The prototype uses a cell phone which can be embedded in age-appropriate skins, such as teddy bears or purses

35. Recording observations from everyday life yield better health Stanford University A Personal Health Application (PHA) to help adolescents with chronic illnesses transition from pediatric to the adult care system assume greater responsibility for their health and health information Research Triangle Institute International and the Cooper Institute A Web tool to help sedentary adults become more physically activity based on personalized information about their physical activity level and lifestyle, generating a customized plan that increases activity University of Massachusetts Medical School An electronic diary that supports collection of self-reported pain and activity data on PDA which will provide patients and their providers with options for analyzing and displaying the data

36. Living Profiles: KATIE

38. Project HealthDesign: Current Grantee Teams • Carnegie Mellon University Seniors at risk of cognitive decline • RTI International Patients with asthma • San Francisco State University Low-income teens who are managing obesity and depression • University of California, Berkeley Adults with Crohn’s Disease • University of California, Irvine Pre-term, low-birth-weight infants and their caregivers

39. What’s Known? • PHRs are really sets of tools that help people manage personal health information

40. What’s Known? • PHRs are really sets of tools that help people manage personal health information • Patients will use these tools

41. What’s Known? • PHRs are really sets of tools that help people manage personal health information • Patients will use these tools • Using these tools recover faster from surgery and better manage chronic disease

42. What’s Known? • PHRs are really sets of tools that help people manage personal health information • Patients will use these tools • Using these tools recover faster from surgery and better manage chronic disease • Clinicians are wary about the value, impact and accountability consequences

43. What’s Known? • PHRs are really sets of tools that help people manage personal health information • Patients will use these tools • Using these tools recover faster from surgery and better manage chronic disease • Clinicians are wary about the value, impact and accountability consequences • Everyone is worried about privacy, but not for the same reasons

44. Design guidance for PHIMs from Project HealthDesign • Context is important

45. Design guidance for PHIMs from Project HealthDesign • Context is important • The “personal” in PHR/PHIM represents perspective, not participant

46. Design guidance for PHIMs from Project HealthDesign • Context is important • The “personal” in PHR/PHIM represents perspective, not participant • Data that doesn’t drive action doesn’t matter (at least to the patient!)

47. Design guidance for PHIMs from Project HealthDesign • Context is important • The “personal” in PHR/PHIM represents perspective, not participant • Data that doesn’t drive action doesn’t matter (at least to the patient!) • Three things foster sharing: good tools for data capture, safe pathways, engaged people and professionals

48. Needs to be Known? • Research Issues • Engineering Issues • Policy Issues

49. Research Issues • Under which conditions does self monitoring improve patient engagement ?

50. Research Issues • Under which conditions does self monitoring improve patient engagement ? • Can ODLs better inform therapeutic regulation?