1. Personal Health Records: Whose Right? Whose Responsibility? Whose Cost? Patricia Flatley Brennan, RN, PhD, FAAN University of Wisconsin-Madison Supported by grants from the National Library of Medicine, Intel Corporation, and the Moehlman Bascom Professorship, UW-Madison

2. Plan for the talk Personal Health Records –Definition and History –PHR’s in the NHII PHRs: Functional Requirements Necessary steps in achieving functional PHR –Rights –Responsibility –Cost Envisioning a PHR System that supports personal & population health

3. Somewhere, not too far away... John, a 41 year old man, presents at an annual physical two major complaints: right lower quadrant tenderness and a slight change in bowel habits Shortly, however, the diagnosis is confirmed: Familial Adenemotosis Polyposis (FAP)

4. DNA tests identify that the mutation is on Codon 1251. Fear, and hope, lead John to consult all of the experts he can find. John’s doctor, believing in collaboration, sends John all of the reports, makes a recommendation of surgery and solicits John’s preferences. John searches the Web, opts for surgery

5. John & his physician talk I think you have a bowel problem What’s wrong? RLQ tenderness ??? Family history ??? Blood Test 00100-11100- 1-110001000- 11100110000 10001100101

6. Electronic Health Records translate patient state into computable forms The patient’s state The Clinician’s Assessment ComputerRecords 0110 11-- 0110 0-00- 1100 SnoMEDNANDACPT

7. A complete picture of the patient needs lots of data! John = 0001000-1000111 10001111000100 0001000- Serum sodium 131 Atph 74 Hgb 41 0001000- Insurance authorization: OK Genotype-match0001000- John’s family members’ records 0001000- Best practices

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

9. Personal Health Information Management

10. ?? ? ? ? ? ? Manage INFORMATION

11. Information Managed in the Home:

12. The Contexts of Care Living Environment Social Environments Psychological Environments Technological Environments Health Services Environments

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

14. Where Do People get Health Information? Physician Family

15. But it’s not just one health care provider… it could be 2, or 4, or 8, or…

17. 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

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

19. A solution on the horizon? NHII: Regional health information exchanges organized around personal health records

20. Regional Health Information Exchange

21. Structure & Benefits of Health Information Exchange PH Pt PBM Labs Prov Payers Patient  Improved quality  Safer care  Decreased cost Providers  Timely access  Rapid universal access  Increased safety quality  Better coordinated care Public Health  Early detection  Outcomes analysis  Bio-terrorism preparedness Commercial Labs  Enhanced public relations;  Decreased EDI costs  Efficiencies Pharmacies/PBMs  Reduced administrative costs  Increased prescription compliance Payers  Improved service  Improved clinical management  Better information After Stead et al, 2005

22. Personal Health Records The Personal Health Record is (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

23. ELECTRONIC RECORDS : Electronic Health Records, Electronic Patient Records & Personal Health Records After Stead et al, 2005

24. Lay people develop robust, complex mechanisms of health information management in the home.

26. Personal Health Records… are controlled by the person who decides which parts of their PHR can be accessed, by whom and for how long. contain information from one’s entire lifetime. contain information from all health care providers. are accessible from any place at any time. are private and secure. are “transparent.” enable exchange of information with other health information systems and health professionals.

27. What would people do with a PHR? Email my doctor Track immunizations Note mistakes in my record Transfer information to new doctors Get and track my test results

28. Maintaining contact with health care providers is a necessary but not sufficient function of PHRs!

30. What is health care & who’s involved? Disease Self Help Self Care Management Community Patient Professional

31. PHR’s: Functional Requirements

32. PHRs Information Communication Education Risk Appraisal Disease Management Health Promotion Scheduling

33. PHRs: Essential Attributes Ubiquitous Accurate Authoritative Available Comprehensible Current Complete

34. Making PHRs a reality Rights Costs Responsbilities

35. PHRs: Whose right?

36. Rights Patient’s right …to know …control access Care partnership rights –Trusted communication –Mutuality Society’s rights of awareness

37. Balancing Stakeholder Rights Patient Provider Public Health Payor Policy Makers

38. PHR’s: Whose Cost?

39. Costs involved in PHRs Device or artifact Information acquisition and recording Information organization & retrieval Information transport Information review and interpretation

40. Who pays for the PHRs?

41. Estimated Societal Impact of Health Information Exchange Point-of-Care Alone (POC) Regional Sharing Alone (RS) RS & POC Ambulatory ADEs (events) 1,252,000336,4002,068,000 Duplicate Tests %, $ 8% ($6.7b) 13-20%20% ($15.1b) ED Costs ($ / visit) ? ( minimal ) $5-26$26 Pharmacy (% savings) 22.4% ($18.3b) 19% ($15.5b) 28% ($26.9b) Sources: Center for Information Technology Leadership, Patient Safety Institute

42. PHR’s: Whose Responsibility?

43. Responsibilities Data integrity Data utilization Attention to preferences Continuity of Care Adherence to treatment plan

44. PHRs: Networks of Responsibility

45. Personal Health Records Library Hospital Physician Office Pharmacy Furtive Records Dentist A Patient-centered Health Information Architecture Consumer Health Information

46. Achieving a PHR-Centered Health Information Architecture Personal Health Records Library Hospital Physician Office Pharmacy Furtive Records Dentist Consumer Health Information 1.Policies that support information exchange 2.Infrastructure that enables information exchange 3.Knowledgeable populace 4.Engaged Providers 5.Sustainable financial strategies

47. “ask yourself if the step you contemplate is going to be of any use to the poorest and weakest man whom you have seen Will he gain anything by it? Will it restore him to control over his life and destiny?… then you will find your doubts and yourself melting away” Gandhi,1947

48. healthsystems.engr.wisc.edu

49. Consumer health informatics

50. Clinic Hospital Physician Office Pharmacy Furtive Records Dentist Bringing it all together

55. SMART Patients

56. Self-assured M otivated A ware R esourceful T alented

57. Where does technology fit in?

58. Personal Health Records: Information, communication, self- monitoring and decision support