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Life, Love and the Pursuit of
Personal Health Records:
the Oregon Experience
Jody Pettit, MD
Health Information Technology Coordinator
Project Director, Oregon Health Information Security &
Privacy Collaboration
Office for Oregon Health Policy & Research
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National Health Policy Forum
February 5, 2008
“Work is love made visible”
--Kahlil Gibran
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Oregon is working on PHR
policies from several angles:
• Health Information Security & Privacy
Collaboration
• Health Record Bank
• Health Fund Board
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Health Information Security &
Privacy Collaboration
• Led to better understanding of Federal & State
Privacy Rule “improved privacy literacy”
• Made State Implementation Plan
– Adopted Markle PHR principles
• Consumer outreach:
– Public Employees Survey
– Report on consumer interviews in urban and rural
areas
– Documentary on HIE & Privacy issues –> road show
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What we have learned:
• Re: Security
“As a society, we’ve already shown that we
can’t handle it”
- quote from a Chief Security Officer
• Re: Privacy
Experts taught us that 87% of privacy
breeches are by those authorized to use the
system
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The HIPAA Privacy Rule:
• Establishes a federal ‘floor’
• No consent required for Payment,
Treatment and Healthcare Operations
• Doesn’t cover new entities offering to
house healthcare data
• Not much enforcement yet
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Very High Concern About Unwanted
Access
Privacy and Access Concerns
12%
12%
18%
80%
26%
77%
56%
Identity
Marketing
theft/fraud firms gaining
access
Employers
gaining
access
53%
Health
insurance
companies
gaining
access
Source: Markle Foundation: Connecting for Health
Some wha t
concerned
Very
concerned
Role for Government in Establishing
Protections
Role for Government in Protections
No Role
23%
Three-quarters
see a role for
federal
government in
establishing
rules to protect
the privacy and
confidentiality
of online health
information
DK/Ref
2%
Role for
Gov't
75%
Source: Markle Foundation: Connecting for Health
16 interviews
with consumers
(two-hour interviews)
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Interviews were done in two locations
Portland metro area:
The Dalles:
With a mix of women and men
Women:
Men:
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Education
High school or GED
Some college
College grad
Age
20’s
30’s
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40’s
50’s
60’s
70’s
Most consumers we interviewed
have a chronic health condition
Have a chronic condition
Do not
Nearly all have used the internet
to look for health information
Have done this
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Have not
How many doctor visits in the last 12 months?
1-2
3-5
6-9
10-15
Any ER visits in the last 12 months?
yes
no
Hospitalized in the last 3 years?
yes
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no
16+
Methods
Interviews had two parts
PART 1 – reactions to a 16-page booklet that
describes the fictional “Secure Network”
The Secure Network is a non-profit service for sharing
patient medical records that are kept in computer files
and stored in different locations.
Your doctors and other health professionals can use the
Secure Network to get quick and easy computer access
to information from your medical records.
This booklet explains things you need to know about
the Secure Network. It also tells what you must do if
you want to block your information from being shared
on the Secure Network.
• Secure Network is just an
information-sharing service (it
shares certain types of electronic
health information with health
professionals; it does not store the
information)
• Information is shared unless
patients take the initiative to opt out
(they can block all or part of their
information)
• Patients’ access to their own
information is very limited
- - continued - -
PART 2 –
reactions to explanatory sheets followed
by questions on topics of Personal Health Record
• “Personal electronic health
record”
• These sheets describe much
expanded patient access to
their own electronic health
information
• These sheets describe much
expanded patient control
over their own electronic health
information
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Selected Excerpts:
Full report is available at:
http://www.q-corp.org/qcorp/images/public/pdfs/OR%20HI
SPC%20consumer%20project%2
0rpt%202007.pdf
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General reactions
• Great interest in the subject matter
• Liked the idea of making their health
records more readily available
– Especially during emergencies or travel
– Especially when they see a new doctor
– Better than relying on their own memory
– Helpful to health professionals – quick, easy
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General reactions,
continued
• Good understanding of how health care
professionals would use the information
• Enormous trust in their own doctors
• A few people had already created a
personal file of their medical records on
their own
• Some people wondered what it would cost
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General reactions,
continued
• In general, the idea of a PHR was quite
attractive to most peple
– The concept of a PHR was more intuitive to
them than the information-sharing service
described in the booklet about ‘Secure
Network’
– Their knowledge and understanding of PHRs
was limited
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Data privacy and security
• In general, people had big concerns about
data privacy and security
– Many concerns about possible identity theft;
people gave examples from real life
– Some concerns about unauthorized access or
possible misuse of their information
• Some wanted oversight by an organization
that was independent
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[What if] my next door neighbor
works for Secure Network and
looks me up?
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[It sounds like this is saying that] I
don’t have to give permission for all
this information to be shared. . .
But who did give the permission? . . .
It sounds like the whole medical world
is able to access my information. How
can this be true? . . . They need to tell
more about this!
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I’d rather check a box that says
I’m giving permission.
They shouldn’t be assuming I’m OK
with it, they should be assuming
that I’m not. . . . .
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[Not having patients give permission
first] is okay as long as Secure
Network is used only by health
professionals – [they’re] saving lives . . .
You don’t want bureaucracy to get in
the way.
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I don’t think it’s necessary for
Secure Network to ask people
whether they should be in or not.
I think everyone should be in for
their own safety.
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Letting patients see their own medical records
• In general, most people favored letting
patients see all of the information in their own
medical records
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It’s a big advantage for patients
to have full access if they want it.
It was very important to me to see
my own records.
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Sometimes keeping track of all your
test results can be really hard.
It would be good for the patient to
have full access, but not necessarily
to be able to change any of it.
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Lessons  Policy
• Take what we have learned to make good
policies
• 75% of people surveyed expect the
Government to help protect their privacy*
• We need to design a system that offers
better privacy than is currently available
*Markle
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Foundation Connecting for Health
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Health Record Bank of Oregon
• CMS Medicaid Transformation Grant $5.5 million to Oregon Medicaid Agency
(DMAP)
• Build a Health Record Bank (HRB)
• Each beneficiary will have a HRB account
so that their health information is available
when it is needed for their care.
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#1 “Gateway Health IT contract”
per INPUT
The Oregon Health Record Bank (HRB) project
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a varied
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Medicaid Transformation Grant:
‘Health Record Bank of Oregon’
• Test of a HRB model for health information
sharing – “networked PHR” = pt + pro data
• Patient control issues engender DEBATE
• Thinking ahead - plan to move it to a neutral
public-private domain with broad governance
• Integrate with health reform package of Oregon
Health Fund Board
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9,000 Oregon Public Employees said:
Question 1. Many different people play a role in your health care. If your health information were availble online, how comfortable would you feel about
having your electronic medical records stored by:
Your Doctor
70
Your Doctor's Hospital/Health System
29
56
Your Health Insurance Company
44
28
72
Comfortable or Very Comfortable
A Private Company
19
82
Uncomfortable or Very Uncomfortable
Source: 2006 PEBB Annual Member Survey
0%
10%
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20%
30%
40%
50%
60%
70%
80%
90%
100%
On Medicaid and On the Internet
in Oregon
2006 OPS respondent file by self-declared Medicaid status (adults)
and by the computer/internet questions:
•
58.3% have computers at home
•
46.4% of those with computers have internet access at home
•
This translates to: about 30% of Oregon’s Medicaid clients have internet
access at home.
•
Another 20% report that, while they don’t have a computer at home, they
have access to the internet through work, library or some other place.
Data courtesy Hanten Day , OOHPR
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Defining ‘Health Record Bank’
• Not just a data warehouse or clinical data
repository – it’s the policies surrounding it
that make it innovative
• Independent health record banking
principles
– Health Record Banking Alliance (HRBA)
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Oregon Health Fund Board:
established by SB329
Barney Speight
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• Governor Kulongoski
appointed Executive Director
• Develop a plan to provide
affordable access to health
care for all Oregonians.
• Staff of eight
• Budget of $1.8 million
• Present a plan to reform
Oregon health care system to
the 2009 legislature
Senate Bill 329
PASSED
“Using information technology that is costneutral or has a positive return on
investment to deliver efficient, safe and
quality health care and a voluntary
program to provide every Oregonian with a
personal electronic health record that is
within the individual’s control, use and
access and that it portable.”
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Health Information Infrastructure
Advisory Committee:
•Established by Executive Order
•Staffed by the Governor’s office
•Broad representation (~20 appointees)
•Advise on policies
•Integrate into Health Fund Board Reform
Package
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Hopes for PHR:
• Better informed, engaged, prompted and
reminded patients:
– More ‘self-service’
– The privacy they expect
• Greater continuity of care through a longitudinal
record
• Improved information flow between points of
care e.g. hospitals, clinics
• Improved patient care – safety, quality and
efficiency
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Another Velvet Revolution?
“There is only one thing I will not concede:
that it might be meaningless to strive in a
good cause.”
– Vaclav Havel
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“Information is the
currency of democracy”
- Thomas Jefferson
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Principles to keep in mind:
• Autonomy
• Social Justice
• Patient Welfare
Source: American College of Physicians
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Health information:
the healthcare ‘system’ isn’t the only
source
Health Data
Health System
Fitness
Home Monitoring
Alternative Providers
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For More Information:
Jody Pettit, MD
Health Information Technology Coordinator,
Project Director, Oregon Health Information
Security and Privacy Collaboration
Office of Oregon Health Policy & Research,
jody.pettit@state.or.us
503.706.2208 mobile
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