E-Health: Personal Health Records

1. E-Health: Personal Health Records Don E. Detmer, MD, MA, FACMI President & CEO American Medical Informatics Association; Professor of Medical Education, University of Virginia 31 October 2005 University of Edinburgh

2. American Medical Informatics Association http://www.amia.org

3. Power corrupts. Power Point corrupts absolutely. - Vincent Cerf

4. What is E-Health?* Any & all aspects of the use of computers & telecommunications technology, especially the Internet, for health purposes. (36 definitions in literature) *Pagliari C, Sloan D, Gregor P, Sullivan F, Detmer DE, Kahan JP, Oortwin W, McGillivray S: What is eHealth (4): A Scoping Exercise to Map the Field. JMIR 2005 (Mar31); 7(1):e9. see http://www.jmir.org/2005/1/e9/

5. What is E-Health?* e-health is an emerging field of medical informatics, referring to the organization and delivery of health services and information using the Internet and related technologies. In a broader sense, the term characterizes not only a technical development, but also a new way of working, an attitude, and a commitment for networked, global thinking, to improve health care locally, regionally, and worldwide by using information and communication technology. (adapted from Eysenbach) *Eysenbach G. What is e-health? J Med Internet Res 2001 Jun 18;3(2):e20. [FREE Full text] [Medline] [CrossRef]

6. AMIA’s Definition: What is e-Health? v.4 • e-Health is the use of information technology to transform health through health care systems that are equitable, safe, effective, efficient, patient-centred, timely, & equitable. - IOM, Crossing the Quality Chasm, 2002 (http://www.nap.edu)

7. Global Status Today • e-Health in nations & regions around the world varies greatly. • In general, health applications lag well behind developments in air travel, banking, e-commerce, entertainment, defense, & finance.

8. What it is today. Mostly non-interactive websites Some interactive sites Some ‘research’ sites Some viable E-health applications What it is not today. Globally available Supported by a robust infrastructure “Just-in-time” “Just-for-me” Standardized Culturally fit Current Status of E-Health

9. Aging Populations Chronic Illness Rising Threats to General Population Weather Bioterrorism Global Infectious Disease Healthcare Costs are expanding. National Budgets are finite. Genomic Science must help. Health IT must help. Preserve Health. The New Realities

10. Personal Health Records: Update • Europe • SUSTAINS ( Sweden) • NHS Direct • NHS Health Space • USA • Large Group Practices • US Veterans Administration • DOD • Insurers/payers & Corporations for Employees

11. SUSTAINS (Supports Users To Access Information & Services) • Provides users with access to their own medical records through the Internet in Uppsala, Sweden • One-time passwords distributed through cell phones • Provides access to data from hospital information system, laboratory database, & GP medical records

12. Lessons from SUSTAINS • Less complex technical environment is better for users • Patients were most interested in seeing their medical records, booking visits, communicating with health care providers, viewing prescription lists, & reading fees • Most users were not concerned about security risks • Appears to have increased confidence & trust in physicians • Eklund B and Joustra-Enquist I. 2004. SUSTAINS – Direct access for the patients to the medical record over the Internet. In E-Health: Current Situation and Examples of Implemented and Beneficial E-Health Applications, I Iakovidis, P Wilson and JC Healy, eds. Amsterdam: IOS Press.

13. Evolution of Healthspace (https://www.healthspace.nhs.uk) • Phase 1: • Choose & Book • Calendar & Reminders • Health Details • Library • Phase 2: Electronic access to health records • (Phase 3: Clicks & Mortar Care?)

14. NHS Direct: 24x7 Access to Advice & Information • Serves England, Wales, Scotland • Multi-Channel Service: • 23 call centers with decision support system • NHS Direct Online (http://www.nhsdirect.nhs.uk/index.asp) • 200 NHS touch screen kiosks • 1.7 million self-help guide books • Digital TV • Gann B. 2004. NHS Direct Online: A multi-channel eHealth service. . In E-Health: Current Situation and Examples of Implemented and Beneficial E-Health Applications, I Iakovidis, P Wilson and JC Healy, eds. Amsterdam: IOS Press.

15. PHRs & ePHRs Emerging to Support Chronic Disease Management • Scotland: Renal Patient View (www.renalpatientview.org) • UK: Diabetes UK is exploring migration of paper-based patient held-summary sheet to ePHR • New Zealand: Commercial ePHR, Doctor Global enables remote tracking & evaluation of health conditions over time (e.g., asthma, cholesterol, diabetes; www.doctorglobal.com) • Australia: My Health Record is a paper-based record for patients with chronic illness in New South Wales • Canada: ePHR being developed for diabetes management in New Brunswick (National Research Council Institute for Information Technology)

16. An Expanding View of Healthcare IT Future Marketplace Patient Safety Clinical Trials Consolidation Electronic Health Record Public Health • Current Marketplace • Fragmented • Replacement • Hospital-Centric PersonalHealthRecords communicate participate collaborate explore learn Patient-Centric Family-Centric National security Health Record Banks Interoperable Genomic Data Consumer Oriented Source: Safran 2005

17. Digital Divides (USA) • 93% Computer at work • 25% get email from patients • 21% send email to patients • 17% report using EHR • Survey family physicians School of Public Communications Syracuse University July 2000 • 25% of online consumers say email usewould influence their choice of a doctor • Delbanco T and Sands DZ NEJM April 2004 • Lower education & socioeconomic levels do better in randomized trials of disease monitoring / chat room support groups • Gustafson et al CHESS

18. Humility

19. Difficulties Inherent in the Perspectives & Theories of Medical Work* • Current Clinical Systems are designed to be: • Objective • Rationalize • Linear • Normalize • Solitary • Single minded • Clinical Work is fundamentally: • Interpretative • Multitasking • Collaborative • Distributed • Opportunistic • Reactive • Interrupted frequently *Wears RL, Berg M, Computer Technology and Clinical Work Still Waiting for Godot JAMA. 2005;293:1261-1263.

20. Average Encounter Timevs Complexity of Visit

21. Why Focus on Patients & Informal Caregivers? The Benefits of the Informed Patient Better informed patients are: • Less anxious • Treatment starts earlier • Follow advice better, esp. chronic illness management • Lower risk interventions are selected • Healthcare costs drop through more self-management & a more efficient use of resources • More satisfied & litigate less - TIP I - 2003

22. Fractured Patient Experiences • Communications • Erratic, Inconsistent, Obtuse, or Absent • Information not layered to meet needs • Issues of Trust & Dignity • Proven Uses of Technology & e-Learning Not Exploited

23. e-Healthcare Models • Web-based Education/Support • One Way, Two Way, Chat / Support Groups • E-mail only • Internet Mediated Integrated Care (“Clicks & Mortar”) • Appointment scheduling • Access to Electronic Medical Record • Monitoring – • Verbal • Device • Prescription refills • Consultation support • Formal Decision Support

24. Patient Interaction • Collect Information • Symptom diaries • Administrative Tasks • Scheduling • Rx Refills • Referrals • Clinical Tasks • Medication Refills • Education • Self-care • Drug Interactions • Reminders • Preventive Health • Communication • Secure email • Explanation of Benefits Source: Safran 2005

25. A Person’s need for Health Information • Easing Business Aspects • Emergency Care • Consultation(s) • Care of Chronic Conditions • Wellness & Prevention • Caring for loved ones at a distance

26. 84% Yes, it would be a good idea 5% No, it would not be a good idea 11% Not sure Current Use of PHR • Modest use of paper health records (40%) • Extremely low use of electronic personal health records (2-5%) • High percentage think they “should” 2004 Harris Interactive Inc. Source: Safran 2005

27. What Do US Patients Say They Want? • Over 70 percent of respondents would use one or more features of the PHR: • Email my doctor 75 percent • Track immunizations 69 percent • Note mistakes in my record 69 percent • Transfer information to new doctors 65 percent • Get & track my test results 63 percent • Almost two-thirds (65 percent) of people with chronic illness say they would use at least one of the PHR features today, compared with 58 percent of those without chronic illness. Source: Connecting for Health and FACCT, random-digit dialing telephone survey of 1,750 adults, May 2004

28. Data & the PHR Two types of data: • Patient entered: Information provided directly by the patient or caregiver. • Professionally entered: Information provided by entities involved in the delivery of or reimbursement for care (e.g., clinicians, pharmacies and pharmacy benefit managers, insurance companies). Challenges: • Applications that rely solely on patient-entered data have not proven to be attractive to large numbers of users or economically viable to vendors. • Applications that attempt to exchange professionally entered data face the challenge of disparate, non-standardized & often reluctant institutional sources. Source: Safran 2005

29. PHR Challenges Source: Safran 2005

30. http://www.patientsite.org Courtesy of Danny Z. Sands, MD

31. Mail: • Secure • Automated routing • Task assignment • Services: • Prescription refills • Appointment requests • Referrals • View bill • Records: • Secure • All CG records • Upcoming appointments • Meds/Problems/Results… • Personal records • Education: • Info prescriptions • Patient selected links • Predefined collections • Videos

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40. Adherence Improved • Connecticut iHealthRecord Adherence Service Clinical Trial: • 100 Patient Study Group vs Control; Statins & Antidepressants • 6 Month Results; Study is Ongoing • 2/3 believe that the Adherence messages from their doctor help them better understand their medication & better manage their condition. • 95% found the Adherence Service easy to use & agree that the service “could be an important part of helping busy doctors provide extra care and information to patients.” • 40+% Reduction in medication drop-off (6% Study Group vs 10.5% Control) based upon initial payor claims data • The study will continue & expand to three locations & move to thousands of patients with the launch of the iHealthRecord

41. Issues with PHR • Security & Privacy • Health Literacy • Workflow • Costs & ROI • Marketing • Operations • Passwords & Support • Service Level Expectations • Patient Entered Data • Liability

42. Patient Control of Information

43. Lessons from Early Adopters Clinicians • Physician promotion is key to getting high consumer adoption in most places. • Physician acceptance requires large up-front efforts to gain buy-in. • If PHR is viewed as beneficial only to patients, it’s hard to get physician support. • PHR is not likely to be incorporated into clinical workflow without addressing EHR integration.

44. Lessons from Early Adopters Patients • Patient-provider secure messaging, online refills, lab results, medication lists, & disease management plans are particularly useful. • Patient-provider messaging wins over an enthusiastic subset of both patients & doctors, & does not overwhelm the inbox of doctors. • Patients feel more empowered when they have access to their office chart information, & many early physician adopters find that helpful. • People with chronic conditions are most likely to need & use PHR-type applications.

45. Working Models for Personal Decision Support • My Chart: • Personal Patient Chart • Health Data Kept to Oneself • My Monitoring: Home linked to Clinicians • My Consultations: Specialists • My Health Care Plan: • Insurance Benefits • Administrative Support to Negotiate System Ex: John Halamka: Care Group http://www.patientsite.did.harvard.edu C. Martin Harris: Cleveland Clinic David Levy: PersonalPath

46. Patient-centric Web Presence • Access to Medical Record & Personal Health Record • Patient can annotate the record • Encrypted, web-based audited communications b/n doctors and patients • John D. Halamka MD, MS CIO, CareGroup, Harvard - Patientsite

47. The Web-connected Patient • “Clicks & Mortar” Connectivity b/n Patient & Relevant Health Team • Patient has access 24/7/365 • Rules for Interaction • Assume 36 hours turnaround for reply • Doctor’s team sees record • Don’t e-mail for help with serious acute problems • Training as needed

48. From Patient Satisfaction to Trust • Replaces many phone calls • Most questions are reasonable & answerable by nurses or other staff • Patients only rarely abuse system • Patient need training & education to use it properly • Security & Confidentiality manageable

49. Requirements for Robust ePHRs • Citizens • Health Literacy • Computer Literacy • Access to Technology • System • IT Infrastructure (e.g., Unique patient identifier) • Health Care Provider Willingness to Interact w/ patients through ePHRs • Funding Mechanism

50. AMIA’s gotEHR? Campaign • Three Areas of Emphasis: • Patients/Public • Awareness in areas where EHRs being deployed • Personal Health Records linked to Care • Policy Makers • Barriers: Regulatory & Payment Structures • Needed Legislation & Funding • Providers • Qualitative Gains Emphasized