OFFICE FOR OREGON HEALTH POLICY AND RESEARCH OFFICE FOR OREGON HEALTH POLICY AND RESEARCH Life, Love and the Pursuit of Personal Health Records: the Oregon

OFFICE FOR OREGON HEALTH POLICY AND RESEARCH


Life, Love and the Pursuit ofLife, Love and the Pursuit of Personal Health Records: Personal Health Records:

the Oregon Experiencethe Oregon Experience

Jody Pettit, MD

Health Information Technology CoordinatorProject Director, Oregon Health Information Security &

Privacy CollaborationOffice for Oregon Health Policy & Research

National Health Policy ForumFebruary 5, 2008


““Work is love made visible”Work is love made visible”

--Kahlil Gibran


Oregon is working on PHR Oregon is working on PHR policies from several angles:policies from several angles:

• Health Information Security & Privacy Collaboration

• Health Record Bank

• Health Fund Board


Health Information Security & Health Information Security & Privacy CollaborationPrivacy 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


What we have learned: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


The HIPAA Privacy Rule: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

Very High Concern About Unwanted Very High Concern About Unwanted AccessAccess

80%

12%

77%

12%

56%

18%

53%

26%

Identitytheft/fraud

Marketingfirms gaining

access

Employersgainingaccess

Healthinsurancecompanies

gainingaccess

Somewhatconcerned

Veryconcerned

Privacy and Access Concerns

Source: Markle Foundation: Connecting for Health

Role for Government in Establishing Role for Government in Establishing ProtectionsProtections

Three-quarters see a role for federal government in establishing rules to protect the privacy and confidentiality of online health information

Role for Gov't75%

No Role23%

DK/Ref2%

Role for Government in Protections

Source: Markle Foundation: Connecting for Health


16 interviews with consumers(two-hour interviews)


Portland metro area: The Dalles:

Women: Men:

Interviews were done in two locations

With a mix of women and men


High school or GED Some college College grad

20’s 30’s 40’s 50’s 60’s 70’s

Education

Age


Nearly all have used the internet to look for health information

Have done this Have not

Most consumers we interviewed have a chronic health condition

Have a chronic condition Do not


Any ER visits in the last 12 months?

yes no

How many doctor visits in the last 12 months?

1-2 3-5 6-9 10-15

Hospitalized in the last 3 years?

yes no

16+

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.

PART 1 – reactions to a 16-page booklet that describes the fictional “Secure Network”

Methods Interviews had two partsInterviews had two parts

• 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

PART 2 – reactions to explanatory sheets followed by questions on topics of Personal Health Record

- - continued - -- - continued - -

• “Personal electronic health record”

• These sheets describe much

expanded patient accessexpanded patient access to their own electronic health information

• These sheets describe much

expanded patient controlexpanded patient control over their own electronic health information



Selected Excerpts:Selected Excerpts:

Full report is available at:

http://www.q-corp.org/q-corp/images/public/pdfs/OR%20HISPC%20consumer%20project%20rpt

%202007.pdf


General reactions


• 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

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

General reactions, continued


• 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

Data privacy and security


[What if] my next door neighbor works for Secure Network and looks me up?


[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!


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. . . . .


[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.


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.


Letting patients see their own medical records

• In general, most people favored letting patients see all of the information in their own medical records


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.


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.


Lessons Lessons Policy 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 Foundation Connecting for Health




Health Record Bank of Oregon 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.

OREGON DIVISION OF MEDICAL ASSISTANCE PROGRAMS



#1 “Gateway Health IT contract” #1 “Gateway Health IT contract” per INPUTper INPUT

The Oregon Health Record Bank (HRB) project leads a varied list of “gateway” health IT contracts…”The Oregon Health Record Bank (HRB) project leads a varied list of “gateway” health IT contracts…”


Medicaid Transformation Grant:Medicaid Transformation Grant:‘Health Record Bank of Oregon’‘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




19

28

56

70

82

72

44

29

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

A Private Company

Your Health Insurance Company

Your Doctor's Hospital/Health System

Your Doctor

Question 1. Many different people play a role in your health care. If your health information were availble online, how comfortable wouldyou feel about having your electronic medical records stored by:

Comfortable or Very Comfortable

Uncomfortable or Very Uncomfortable

Source: 2006 PEBB Annual Member Survey

9,000 Oregon Public Employees said: 9,000 Oregon Public Employees said:


On Medicaid and On the InternetOn Medicaid and On the Internetin Oregonin 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


Defining ‘Health Record Bank’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)



Oregon Health Fund Board:Oregon Health Fund Board:established by SB329established by SB329

• 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

Barney Speight


Senate Bill 329Senate Bill 329PASSEDPASSED

“Using information technology that is cost-neutral 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 provide every Oregonian with a personal electronic health record personal electronic health record that is within the individual’s control, use and access and that it portable.”


Health Information Infrastructure Health Information Infrastructure Advisory Committee: 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


Hopes for PHR: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


AnotherAnother Velvet Revolution Velvet Revolution??

“There is only one thing I will not concede: that it might be meaningless to strive in a good cause.”

– Vaclav Havel



““Information is theInformation is thecurrency of democracy”currency of democracy”

- Thomas Jefferson


Principles to keep in mind:Principles to keep in mind:

• Autonomy

• Social Justice

• Patient Welfare

Source: American College of Physicians


Health information:Health information: the healthcare ‘system’ isn’t the only the healthcare ‘system’ isn’t the only

sourcesource

Health Data

Health System

Fitness

Home Monitoring

Alternative Providers


For More Information: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,

[email protected]

503.706.2208 mobile

Documents

OFFICE FOR OREGON HEALTH POLICY AND RESEARCH OFFICE FOR OREGON HEALTH POLICY AND RESEARCH Life, Love and the Pursuit of Personal Health Records: the Oregon