Title: 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
1Privacy 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
2Privacy 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 - balances
- my presentation will explore these two
areas...
3 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?
4Three 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
5 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
6 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
7EHR Privacy Concerns Harris National
- sensitive health data may be leaked...............
.............. 70 - increased sharing of personal health data without
patients knowledge...............................
......................... 69 - may be inadequate data security...................
................ 69 - could increase not decrease medical
errors............... 65 - worried about computerization, some patients
wont give sensitive information to health care
providers.... 65 - federal health privacy rules will be reduced, in
the name of efficiency......................
..................................... 62
8 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 werent sure
9 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
10 Markle Survey Tested Public Views of
Optimal Program
- asked respondents to imagine a nationwide
health information exchangeset up for doctors
and patients - -- all information controlled in secure online
accounts - -- medical information within network shared
only with patients - permission
- -- patient information not in one central
database continue to - be held by patients 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)
11 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
- -- individuals permission for all network
sharing - -- individual can decide which information
shared - -- no penalty if patient didnt
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 -
12 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
-
13 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
14 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...
15 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-base
d organizational settings -- good and bad - often identify needs for new policies/laws
16 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 - populations
- -- vertically integrated organizations (health
plans insurers) - -- regional health data systems
- -- national health operations
- -- employer health systems
- -- research institutions
-
17 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
18 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
19 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
- -- www.privacyexchange.org
- -- www.pandab.org
- we welcome comments and reactions...