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Privacy a Central Issue in EHR and Health Data Network Programs

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Privacy and EHR Programs Dr. Alan F. Westin Professor of Public Law and Government Emeritus, Columbia University Director, Program on Information Technology, Health Records and Privacy at the PHIPA Summit Conference, Toronto, November 3, 2005.

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Privacy and EHR ProgramsDr. Alan F. WestinProfessor of Public Law and Government Emeritus, Columbia UniversityDirector, Program on Information Technology, Health Records and Privacy at the PHIPA Summit Conference, Toronto, November 3, 2005

privacy a central issue in ehr and health data network programs
Privacy a Central Issue in EHR and Health Data Network Programs

• many nations moving toward EHR systems: facing issues of technology and institutional change

• privacy a “make or break” factor in public response

• but how to approach EHR privacy not yet clear

• I see two activities as crucial:

A. Sophisticated surveys of public and patients

B. Empirical research into how current EHR

programs and networks are affecting privacy


• my presentation will explore these two areas...

past surveys on health privacy pre ehr
Past Surveys on Health Privacy - pre EHR

• U.S. and Canadian publics view health and financial information as the most sensitive

• trust in HC practitioners high, but for data security low

• main worry -- health information going to non-health organizations (employers, life insurers, marketing)

• also ambivalent about computer effects

• how will these attitudes play out in EHR programs?

• and what kinds of surveys can test public and patient perceptions well?

three u s surveys in 2005
HARRIS Telephone. February. 1,012 respondents. Represents national public of 214 million adults. Sponsored by new EHR-Privacy Program of my Center Harris National

HARRIS Online survey of 2,638 adults, February. Represents 163 million U.S. adults online; sponsored by Wall Street Journal. Harris Online

MARKLE Foundation. Telephone. September. 800 adults representative of national population and 800 registered voters. Markle

Three U.S. Surveys in 2005
low awareness of ehr programs
Harris National (February) survey described current U.S. EHR national program efforts and asked: “Have you read or heard anything about this program?”

Only 29% of the adult public said yes -- represents 62 million out of 214 million adults.

Awareness highest -- as expected -- among better-educated, higher-income, and online-using

Lowest among low income, least educated, non-technology-using groups

Probably increased since February -- government actions and media coverage -- might be 35% now

Low Awareness of EHR Programs
online users see ehr positives
Harris Online documented broad optimism re EHR:

62% believe EHR can decrease frequency of medical errors significantly

73% believe EHR can reduce healthcare costs significantly

76% believe EHR can improve patient care by reducing unnecessary tests and procedures

But, 67% of online users also believe “The use of Electronic Medical Records makes it more difficult to ensure patients’ privacy”

Online Users See EHR Positives
ehr privacy concerns harris national
sensitive health data may be leaked............................. 70%

increased sharing of personal health data without patient’s knowledge........................................................ 69%

may be inadequate data security................................... 69%

could increase not decrease medical errors............... 65%

worried about computerization, some patients won’t give sensitive information to health care providers.... 65%

federal health privacy rules will be reduced, in the name of efficiency........................................................... 62%

EHR Privacy Concerns: Harris National
harris national found public divided on ehr and privacy
• when asked whether expected benefits to patients and society of an EHR system outweigh potential risks to privacy, or whether privacy risks outweigh expected benefits, U.S. public divided right down the middle

48% say the benefits outweigh risks to privacy

47% say the privacy risks outweigh the expected benefit

4% weren’t sure

Harris National found Public Divided on EHR and Privacy
empowering patients seen as key
“Since most adults now use computers, the new patient EHR system could arrange ways for consumers to track their own personal information in the new system and exercise the privacy rights they were promised.How important do you think it is that individual consumer tools be incorporated in the new patient Electronic Medical Record system from the start?”

More than eight out of ten respondents (82%) rated such consumer empowerment as important

45% of these considered it Very Important

Empowering Patients Seen as Key...
markle survey tested public views of optimal program
Markle Survey Tested Public Views of Optimal Program

• asked respondents to “imagine” a “nationwide health information exchange…set up for doctors and patients”

-- all information controlled in secure online accounts

-- medical information within network shared only with patient’s


-- patient information not in one central database; continue to

be held by patient’s doctor or health care provider

-- but how patient information would be collected and used were

not explained

• 72% “favored” creation of such a network; 23% “oppose” (the Intense Privacy sector of US public)

privacy and security features seen as essential markle
Privacy and Security Features Seen as Essential (Markle)

• attributes seen as high to absolute priority AND as making respondents more likely to support EHR

-- controls to confirm identity of users

-- patient can review who accessed

-- individual’s permission for all network sharing

-- individual can decide which information shared

-- no penalty if patient didn’t participate/share

-- employers have no access

-- health record available via Internet in “secure account”

-- “independent bodies accountable to the public” would

govern, consumer representatives included

other markle findings
Other MARKLE Findings...

• 60% support for creation of secure online “personal health record service”

• 68% say would use to check for mistakes in medical record

• 68% to check and refill prescriptions

• 58% to get results over the Internet

• 57% to conduct secure emails with doctors

u s surveys summary 1
U.S. Surveys Summary -- 1

1. two-thirds of U.S. public not yet informed about national EHR project; only elites so far (same in Canada?)

2. respondents project strong current health privacy concerns onto future IT systems

3. primary fears:

A. EHR will enhance distribution of personal health data into organizations setting consumer benefits and opportunities or for government licensing or law enforcement uses

B. Weak data security will lead to leakage of sensitive patient health information

u s surveys summary 2
U.S. Surveys Summary -- 2

4. half U.S. public feels potential EHR benefits DO NOT

outweigh privacy risks: RATIONAL AMBIVALENCE

5. but -- if optimal conditions per Markle could be

achieved, 72% would support

6. however, rhetoric promising privacy will not be

enough; performance will be critical

7. calls for PRIVACY BY DESIGN programs not only to

be applied to EHR and network efforts but also to

be measured and evaluated from the start

• I turn next to how that might be done...

empirical studies of unfolding ehr
Empirical Studies of Unfolding EHR

• since mid-70s, have been valuable heath-privacy technology assessments in U.S. and elsewhere

• best are “case study” type -- detailed facts and then-and-now comparisons

• combine analysis of new-technology application impacts on care and organizational performance with effects on patient privacy expectations

• produce value judgments about state of privacy-disclosure balances in new-technology-based organizational settings -- good and bad

• often identify needs for new policies/laws

can and should be applied to ehr network programs in u s and canada
Can (and Should) Be Applied to EHR/Network Programs in U.S. and Canada

• basic model: team of health-care, technology, and privacy experts conducts on-site visits to representative group of current EHR and network programs

• examples of types of programs:

-- care-providing organizations, general and for special


-- vertically integrated organizations (health plans; insurers)

-- regional health data systems

-- national health operations

-- employer health systems

-- research institutions

elements of the assessment
Elements of the Assessment

• five phases of a good technology-privacy study

1. the pre-EHR application operation as baseline

2. the EHR or network program described in detail

3. in-depth surveys of patient, provider, and staff experiences and judgments

4. a detailed impacts assessment, against current legal standards and guidelines; new patient expectations and behaviors; new norms for an EHR world

5. suggestions for new laws, policies, procedures for this health care sector

timing is right to start now
Timing Is Right to Start Now

• U.S. and Canada have important EHR and data network programs under way

• their progress and plans for proceeding provide a solid basis for a Canadian national survey and an empirical assessment program

• conducting empirical studies in 2006-2007 will provide basis for trend-line analyses as these programs deepen and expand across a decade

• effects of EHR and networks on national health care systems and health privacy environments will be too important to wait until later to study

a privacy by design proposal
A Privacy by Design Proposal

• my Program on Information Technology, Health Records, and Privacy has a Report on past privacy assessments and how EHR studies can be done now

• Building Privacy by Design In Health Data Systems

• available (free) at our two web sites:



• we welcome comments and reactions...