Post on 18-Dec-2015
Personal Health Records:
Whose Right? Whose Responsibility?
Whose Cost?Patricia Flatley Brennan, RN, PhD, FAAN
University of Wisconsin-MadisonSupported by grants from the National Library of Medicine, Intel
Corporation, and the Moehlman Bascom Professorship, UW-Madison
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
Somewhere, not too far away...
John, a 41 year old man, presents at an annual physicaltwo major complaints: right lower quadranttenderness and a slight change in bowel habits
Shortly, however, the diagnosis is confirmed:
Familial Adenemotosis Polyposis (FAP)
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
John & his physician talkJohn & his physician talkI think you haveI think you havea bowel problema bowel problemWhat’s wrong?What’s wrong?
RLQ tendernessRLQ tenderness??? Family history??? Family history??? Blood Test??? Blood Test
00100-11100-00100-11100-1-110001000-1-110001000-11100110000111001100001000110010110001100101
Electronic Health Recordstranslate patient state into
computable forms
The The patient’spatient’s
statestate The Clinician’s The Clinician’s AssessmentAssessment
ComputerComputer
RecordsRecords
0110011011--11--011001100-00-0-00-11001100
SnoMEDSnoMED
NANDANANDA
CPTCPT
A complete picture of the patient needs lots of data!
John = 0001000-1000111John = 0001000-10001111000111100010010001111000100
0001000- 0001000- Serum sodium 131Serum sodium 131Atph 74Atph 74Hgb 41Hgb 41
0001000- 0001000- Insurance Insurance authorization:authorization:
OKOK
Genotype-matchGenotype-match0001000-0001000-
John’s family members’John’s family members’recordsrecords
0001000- 0001000-
Best practicesBest practices
Appointments Contact Info Med Schedule Treatment
Medical History Insurance Labs X-Rays
Immunizations Birth/Death RecordsSelf-Care Procedure Info
Self-Monitoring Provider info Literature Poison Control
Clinic/Hospital Info Other
Information Managed in the Home:
The Contexts of Care
• Living Environment
• Social Environments
• Psychological Environments
• Technological Environments
• Health Services Environments
Where Do People get Health Information?
0 5 10 15 20 25 30 35
Physician Clinic/Hospital Public Health Nurse
Library News Health Magazines
Internet Hotlines Reference Books
Alt Med Sources Family/Friends School
Classes Other
Physician
Family
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
Components of a personal health information
system
Self-Monitoring
Clinical Records
Communication
Decision Support
A solution on the horizon?
NHII:Regional health information exchanges organized around
personal health records
Structure & Benefits of Structure & Benefits of
Health Information Exchange Health Information Exchange
PHPHPtPt
PBMPBM
LabsLabs
ProvProv PayersPayersPatient 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
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
ELECTRONIC RECORDS:Electronic Health Records, Electronic Patient Records
& Personal Health Records
After Stead et al, 2005
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.
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
What is health care & who’s involved?
Disease
Self Help Self Care Management
Community
Patient
Professional
PHRs• Information
• Communication• Education
• Risk Appraisal• Disease Management• Health Promotion
• Scheduling
Rights
• Patient’s right …to know
…control access• Care partnership rights
– Trusted communication– Mutuality
• Society’s rights of awareness
Costs involved in PHRs
• Device or artifact• Information acquisition and recording• Information organization & retrieval• Information transport • Information review and interpretation
NetworkInfrastructure
Clinic Records
Xrays and labs
Patient-held
Hospitals
Doctor'sOffices
Public Health
Who pays for the PHRs?
Estimated Societal Impact of Estimated Societal Impact of Health Information ExchangeHealth Information Exchange
Point-of-Care Alone (POC)
Regional Sharing Alone
(RS)RS & POC
Ambulatory ADEs (events)
1,252,000 336,400 2,068,000
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
Responsibilities
• Data integrity• Data utilization• Attention to preferences• Continuity of Care• Adherence to treatment plan
Personal Health Records
Library
Hospital
Physician Office
Pharmacy
FurtiveRecords
Dentist
A Patient-centered Health Information Architecture
Consumer Health Information
Achieving a PHR-Centered Health Information Architecture
Personal Health Records
Library
Hospital
Physician Office
Pharmacy
FurtiveRecords
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
“ask yourself if the step you contemplate is going to be of any
use to the poorest and weakest man
whom you have seenWill 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