Privacy a Central Issue in EHR and Health Data Network Programs

1. 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

2. 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 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?

4. 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

5. 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

6. 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

7. 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

8. • 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

9. “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...

10. 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 permission -- 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)

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 -- 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 •

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-based 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...