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
183(2)e20. FREE Full text Medline
CrossRef
6
AMIAs 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
Current Status of E-Health

• 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

9
The New Realities

• 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.

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/ind
  ex.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. 20052931261-1263.

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 Persons 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
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

32
(No Transcript)
33
(No Transcript)
34
(No Transcript)
35
(No Transcript)
36
(No Transcript)
37
b
38
(No Transcript)
39
(No Transcript)
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,
  its 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.di
  d.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
• Doctors team sees record
• Dont 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
AMIAs 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

51
Why Use It?

• Improve
• Communication
• Patient education
• Patient satisfaction
• Efficiency
• Enable time shifting
• Reduce telephone time costs?
• /- Provide competitive advantage
• Possible new revenue stream

52
Policies Safeguards

• Patients staff know follow rules
• E-mail communications
• Part of formal medical record
• Require/deserve secure system
• Use Appropriately

53
Patients Must Know Play by the Rules

• Dont use for emergencies
• Expect 48 hour turnaround
• Expect office staff to see possibly respond to
  messages
• No lengthy messages no tennis games / volleys
• Consider communications confidential part of
  your medical record
• Accept that NO e-mail system is totally secure
• (/- Additional payments)
• Formally agree to the above

54
General Procedures for Staff

• Maintain as a Formal System
• Inform Patient Document Their Acceptance
• Recognize as formal communication with patient
• Confidential
• Part of formal record
• Triage respond with FAQs as appropriate

55
Biggest Problems

• Not saved in patients medical record
• Not following procedures
• More likely to be on staff than patient side
• Inappropriate use for type of message
• (Payment)
• (Poor computer skills)
• (Liability risks are low patients like it)

56
Efficiency

• 71 MDs spend 5 minutes/msg
• May partially offset phone calls
• Modest volume of messages
• lt 1 per day per 100 pts (BIDMC)
• Only 9.5 patients use it

Source Manhattan Research Taking the Pulse 5.0
57
Biggest Assets

• Improved Efficiency
• Reduces telephone tag
• Allows Staff to respond to some calls

58
General Issues

• Physician Concerns
• Fear of Liability 72
• Efficiency Concerns 63
• Lack of Payment 58
• No Standards 58
• Source Manhattan Research Taking the Pulse 5.0

59
Steps to Use

• Develop or adopt policy
• Select a technology
• Get wired
• Decide how to implement
• Determine office workflow
• Evaluate impact

60
Future Evolution

• Full patient access to medical record
• Automated access to hyperlinked
• Medical glossaries
• Supplementary information
• Translation into different languages
• Connectivity to
• Multiple data sources / EHR
• Personal Health Record
• Multimedia educational material
• Data from home-based monitoring

61
Conclusions

• Useful for clinical communication
• Appropriate use essential
• Complementary to other forms of communication
• Practical policies important

62
N Engl J Med 35017 Apr 22, 2004
63
Principles The Patient (/or Caregiver) must be
Central Actively Involved.

• Requires Relevant Knowledge Skills
• Condition(s) How to relate to them
• Access to appropriate Resources
• Self-care
• Assured Communications, Assessment Support
• Requires an Evolving Information Communications
  Infrastructure

64
  As for the future, your task is not to
foresee, but to enable it.

•  
• -        de Saint-Exeupery

65
Ten by Ten,

• A Beginning
• Train 10,000 health care professionals in applied
  health and medical informatics by the year 2010.
  
• A goal of the American Medical Informatics
  Association in partnership with Oregon Health
  Science University (OHSU) and other participating
  informatics training programs.

66
Converting evidence to care
Original research
18
variable
Negative results
Dickersin, 1987
Submission
46
0.5 year
Kumar, 1992
17 years to apply 14 of research knowledge to
patient care!
Koren, 1989
Acceptance
Negative results
0.6 year
Kumar, 1992
Publication
1714
Expert opinion
35
0.3 year
Poyer, 1982
Balas, 1995
Lack of numbers
Bibliographic databases
50
6. 0 - 13.0 years
Antman, 1992
Poynard, 1985
Reviews, guidelines, textbook
9.3 years
Inconsistent indexing
Patient Care
Balas Yearbook Medical Informatics 2000gtre4,
courtesy M Overhage
67
On-line Curriculum

• Overview of Discipline and Its History
• Biomedical Computing
• Electronic Health Records and Health Information
  Exchange
• Decision Support Evolution and Current
  Approaches
• Standards Privacy, Confidentiality, and Security
  
• Evidence-Based Medicine and Medical
  Decision-Making
• Information Retrieval and Digital Libraries
• Bioinformatics
• Imaging Informatics and Telemedicine
• Other Informatics Consumer Health, Public
  Health, and Nursing
• Organization and Management Issues in Informatics
• Career and Professional Development

On-line modules followed by an intensive
in-person sessions led by experienced leaders in
the field.
68
(No Transcript)
69
Elements of Successful ePHR Implementation

• National patient identifiers or defined approach
  to authentication
• Strong infrastructure (e.g., standards, privacy
  framework technical support)
• Sound funding strategy
• Buy-in by health care professionals

70
Warning Stand-alone ePHRs May Be Insufficient

• The Markle Foundations Connecting for Health
  concluded that disease management applications
  that encouraged patients to enter very detailed
  information pertaining to a single chronic
  condition may provide some immediate benefit to
  users, but simply offering people a means of
  recording information on a daily basis does not
  make them better managers of their health or
  health care. Without a clinician at the other
  end of the application continually providing
  advice, making modifications to prescriptions or
  otherwise providing them with some ideas to help
  better manage their condition these systems were
  doomed to fail.
• Connecting for Health (Markle Foundation). 2004.
  Connecting Americans to their Healthcare. Final
  Report of the Working Group on Policies for
  Electronic Information Sharing Between Doctors
  and Patients. www.connectingforhealth.org.

71
If you think education is expensive, try
ignorance.

• - Automobile Bumper Sticker

72

• Major New Initiatives

73
(No Transcript)
74
Thank You for Your Hospitality Best Wishes

• Discussion?!

75
Additional References

• Berner ES, Detmer ED, Simborg D.Will the wave
  finally break? A brief view of the adoption of
  electronic medical records in the United States.
  J Am Med Inform Assoc. 2005 January-February12(1)
  3-7.
• Detmer DE Singleton P Policy for Informed
  Patients A European Perspective. Harvard Health
  Policy Review, 2004 Spring5(1)81-88.
• Yasnoff WA, Humphreys BL, Overhage JM, Detmer DE,
  Brennan PF, Morris RW, Middleton B, Bates DW,
  Fanning JP.A consensus action agenda for
  achieving the national health information
  infrastructure.J Am Med Inform Assoc. 2004
  Jul-Aug11(4)332-8.
• Detmer DE. Building the national health
  information infrastructure for personal health,
  health care services, public health, and
  research.BMC Med Inform Decis Mak. 2003 Jan
  063(1)1.
• Detmer DE. A new health system and its quality
  agenda.Front Health Serv Manage. 2001
  Fall18(1)3-30. Erratum in Front Health Serv
  Manage 2001 Winter18(2)42.
• Detmer DE. Information technology for quality
  health care a summary of United Kingdom and
  United States experiences.Qual Health Care. 2000
  Sep9(3)181-9.
• Detmer DE.Your privacy or your health--will
  medical privacy legislation stop quality health
  care?Int J Qual Health Care. 2000 Feb12(1)1-3

76
E-Health An International Perspective

• Don E. Detmer, MD, MA, FACMI
• President CEO
• American Medical Informatics Association
• Professor of Medical Education, University of
  Virginia
• 1 November 2005
• Dunblane, Scotland