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Slide 1-

Introduction to Health Informatics: Privacy, Security, and Confidentiality Health Informatics in Low- and Middle-Income Countries Short Course for Health Information System Professionals
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Privacy, Security, and Confidentiality Define and discern the differences between privacy, security, and confidentiality Discuss methods for using information technology to protect privacy and confidentiality Learning Objectives 2
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Respect for persons Beneficence Justice Principles of Ethics 3
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Autonomy and self-determination Informed consent Protection of vulnerable populations Respect for Persons 4
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Weigh risks versus benefits Physical, mental, and social well-being Risk reduction (to a minimum) Protection of participants Beneficence 5
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Equal distribution of risk and benefits Equitable recruitment of participants Protection of vulnerable groups Justice 6
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Privacy, Security, and Confidentiality Definitions Concerns Privacy Security Tools for protecting health information Health Insurance Portability and Accountability Act (HIPAA) Privacy rule Security rule Enhancements in Health Information Technology for Economic and Clinical Health Act legislation Implications 7
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Definitions Privacy The right to be left alone The right to keep personal information secret The right to control personal information Confidentiality Sharing or disseminating data only to those with a “need to know” Security Mechanisms to ensure the safety of data and systems in which the data reside 8
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Definitions Individually identifiable health information: Any data that can be correlated with an individual Also called protected health information (PHI) Consent (in context of privacy): Written or verbal permission to allow use of your individually identifiable health information 9
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Concerns about Privacy Personal privacy versus common good Continued disclosures Concerns of public De-identified data 10
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Digital Health and Privacy, Security, and Confidentiality 11
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Personal Privacy versus the Common Good Concerns expressed in American Civil Liberties Union video Scary Pizza A spectrum of views: One end holds that although personal privacy is important, there are some instances when the common good of society outweighs it, such as in biosurveillance (Gostin & Hodge, 2002; Hodge, Gostin, & Jacobson, 1999). The other end holds that personal privacy trumps all other concerns (Privacy Rights Clearinghouse, 2009; see also video by Deborah Peel, Designing Technology to Restore Privacy, http://www.patientprivacyrights.org). More “balanced” views? (California Health Care Foundation, 2008; Detmer, 2010; American College of Physicians, 2011) Where do your views fit? 12
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Patient Information Disclosures Healthcare cybersecurity attacks over the past five years have increased 125 percent as the industry has become an easy target; PHI is 50 times more valuable than financial information on the black market (Kutscher, 2016). In Portland, Oregon, thieves broke into a car with back-up disks and tapes containing records of 365,000 patients (Rojas-Burke, 2006). Several episodes from Virginia, including a laptop with data of more than 1 million veterans, were recovered without apparent access (Lee & Goldfarb, 2006). A hack of Indianapolis-based payer Anthem’s information technology (IT) systems exposed the personal data of approximately 80 million customers (Perma, 2015). Improper disclosure of research participants’ PHI resulted in a $3.9 million HIPAA settlement (U.S. Department of Health and Human Services [HHS], 2016b). A hospital paid hackers $17,000 to unlock electronic health records frozen in a “ransomware” attack (Conn, 2016). 13
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Patient Information Disclosures Privacy Rights Clearinghouse provides searchable Chronology of Data Breaches—not limited to medical: http://www.privacyrights.org/data-breach HHS (2016a) must post list of breaches of unsecured PHI affecting 500 or more individuals (“wall of shame”): https://ocrportal.hhs.gov/ocr/breach/breach_report.jsf 2015 top 10 data breaches accounted for just more than111 million records; the top 6 breaches affected at least 1 million individuals. 14
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Breaches Adversely Impact Organizations Costs (Ponemon Institute, 2015) Estimated cost to the industry: $6 billion Average cost per breach: $2.1 million Significant part of cost: “lost business” Criminal attacks up 125 percent in healthcare organizations—now number one cause of breaches Attack sources (HIMSS, 2015) Foreign sources, hacktivist, nation-state actor, malicious insider, hacker, social engineering, online scam artist Security budgets (HIMSS, 2015) Healthcare providers average more than 6 percent of the IT budget for security The federal government spends 16 percent of its IT budget on security, while financial and banking institutions spend 12 to 15 percent Information security is a business priority 15
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Challenges from Proliferation of Technologies and Applications Increased technology use by all care providers Health information exchange and data-sharing activities across multiple networks Cloud computing and third-party outsourcing Increased use by patients, families, and consumers of their devices (tablets, smartphones, etc.) New models of care require more care providers to access data across the patient care continuum Clinicians using their own devices Personal laptops, tablet devices, smartphones, and so on Connected medical devices and implantable devices 16
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Some Technologies Can Worsen the Problem USB (“thumb”) drives run programs when plugged into a USB port; they can be modified to extract data from computer (Wright & Sittig, 2007a, 2007b). Personal health records, other systems, may lack encryption and can be easily compromised. Ten percent of hard drives sold by a second-hand retailer in Canada had remnants of PHI (El Emam, Neri, & Jonker, 2007). Peer-to-peer file sharing—0.5 percent of all U.S. IP addresses have PHI (El Emam et al., 2010). Digital photocopiers store all copies made (Keteyian, 2010); scanners may also store copies. Restrict physical access where possible and always encrypt! 17
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Healthcare Organizations Are Not Well Prepared for Security Security budgets are not keeping pace with complex IT environments and the growing risk of attacks (HIMSS, 2015). The growing sophistication of attacks and the number of threats make it hard to keep up. There is a need for innovative, advanced security tools and in-depth approaches to address threats and vulnerabilities (HIMSS, 2015). There is not enough highly skilled, security expertise (Ponemon Institute, 2015). Paper security breaches remain an issue (Ponemon Institute, 2015). Data leakage is a primary threat. Identity and access management is a top priority. Chief information security officers are not in all organizations. 18
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What is the role of your government? 19
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European Union General Data Protection Regulation The General Data Protection Regulation (GDPR) imposes new rules on organizations that offer goods and services to people in the European Union (EU), or that collect and analyze data tied to EU residents, no matter where they are located. Enforced on May 25, 2018 20
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GDPR Data Definitions Regardless of Nationality or EU Residence 21 Personal Data (from GDPR) “…means any information relating to an identified or identifiable natural person ('data subject'); an identifiable natural person is one who can be identified, directly or indirectly, in particular by reference to an identifier such as a name, an identification number, location data, an online identifier or to one or more factors specific to the physical, physiological, genetic, mental, economic, cultural or social identity of that natural person.” Examples: Name Identification number (e.g., Social Security number) Location data (e.g., home address) Online identifier (e.g., e-mail address, screen names, IP address, device IDs) Genetic data (e.g., biological samples from an individual) Biometric data (e.g., fingerprints, facial recognition) “The GDPR also requires compliance from non-EU organizations that offer goods or services to EU residents or monitor the behavior of EU residents.” Source: Brief: You Need An Action Plan For The GDPR; Forrester Research; October 2016
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GDPR Basics Provide notification to data subjects, in clear and plain language. Request and obtain the data subject’s affirmative and granular consent. Discontinue with processing activities if the data subject denies consent. Provide a mechanism for data subjects to withdraw consent. Obtain affirmative consent from a child’s (under the age of 16) parent or guardian. 22
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23 What do other governments do?
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Related Issues for Medical Privacy Who “owns” medical information? Complex; varies from state to state (http://www.healthinfolaw.org/comparative-analysis/who-owns-medical-records-50-state-comparison) May have economic value, which should be shared back to the patient (Hall & Shulman, 2009; Rodwin, 2009) “Compelled” disclosures (Rothstein & Talbott, 2006) We are often compelled to disclose information for nonclinical care reasons Ultimate “personal identifier” may be individual’s genome (McGuire & Gibbs, 2006) Even “de-identified” data may compromise privacy (Malin & Sweeney, 2005) Genome of family members can identify siblings (Cassa et al., 2008) Data from genome-wide association studies can reveal individual-level information (Lumley & Rice, 2010) 24
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Health Information Rights Declaration of Health Data Rights Right to our own health data Right to know the source of each health data element Right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; if data exist in computable form, they must be made available in that form Right to share our health data with others as we see fit Read: https://sites.tufts.edu/prep/2009/07/07/declaration-of-health-data-rights American Health Information Management Association (AHIMA) Health Information Bill of Rights (2009) http://bok.ahima.org/PdfView?oid=107674 Slightly more detailed but with similar provisions HIPAA Privacy Rule Provisions (2016) www.healthit.gov/patients-families/your-health-information-rights 25
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Are “de-identified” data more secure? 87 percent of the U.S. population can be uniquely identified by five-digit ZIP code, gender, and date of birth (Sweeney, 2002). Sweeney identified William Weld, governor of Massachusetts, in a health insurance database for state employees by purchasing voter registration for Cambridge, Massachusetts, for $20 and linking ZIP code, gender, and date of birth to the “de‑identified” medical database (Sweeney, 1997). Genomic data can aid in re-identification in clinical research studies (Malin & Sweeney, 2005; Lumley & Rice, 2010). Social Security numbers can be predicted from public data (Acquisti & Gross, 2009). Not Necessarily 26
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How Governor Weld Was Identified Figure: The overlapping data enabled identification of the governor. (Adapted from Sweeney, 1997) 27 Zip Date of birth Gender
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Concerns about Security Comprehensive overview (Herzig, 2010) Guide to Privacy and Security of Electronic Health Information (Office of the National Coordinator for Health Information Technology [ONC] & Office for Civil Rights [OCR], 2015) https://www.youtube.com/watch?v=phrXsdnhE7w Many points of leakage Also a problem for paper records Consequences of poor security Medical identity theft 28
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Flow of Information in Healthcare: Many Points to “Leak” Chart. Flow of information in healthcare (Rindfleisch, 1997) 29
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Security for Paper Records Is a Significant Problem Difficult to audit trail of paper chart Fax machines, scanners are easily accessible Records frequently copied for many reasons New providers, insurance purposes Records abstracted for variety of purposes Research Quality assurance Insurance fraud → Medical Information Bureau (Rothfeder, 1992) 30
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Potential Consequences of Poor Security According to Rindfleisch (1997): Patients avoid healthcare Patients lie Providers avoid entering sensitive data Providers devise workarounds California Health Care Foundation (2005) Thirteen percent of consumers admit to engaging in “privacy-protective” behaviors that might their put health at risk, such as: Asking a doctor to lie about a diagnosis Paying for a test because they did not want to submit a claim Avoiding seeing their regular doctor 31
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Medical Identity Theft AHIMA reported in 2008 a growing concern of general identity theft 2015 Medical Identity Fraud Alliance Annual Report Medical information more valuable than financial Costly to the victim Can be complex to solve over a long time HHS report outlines approaches to prevention, detection, and remediation (ONC & OCR, 2015) 32
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Tools for Protecting Health Information Brought to wider light by Institute of Medicine report For the Record (Committee on Maintaining Privacy and Security,1997) Guide to Privacy and Security of Electronic Health Information (ONC & OCR, 2015) National Institute of Standards and Technology (NIST) Critical Cybersecurity Infrastructure Framework SANS And many more …. 33
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Threats to Security Insider Accidental disclosure Curiosity Malicious/subornation Outsider Organized crime Hacktivists Cyber thieves 34
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Technologies to Secure Information Deterrents Alerts Audit trails System management precautions Software management Analysis of vulnerability 35 Obstacles Authentication Authorization Integrity management Digital signatures Encryption Firewalls Rights management
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Encryption Necessary but not sufficient to ensure security Is a “safe harbor” under federal and state laws when data loss occurs Should, however, be used for all communications over public networks, such as the Internet, and with mobile devices Information is scrambled and unscrambled using a key Types: Symmetric and asymmetric Asymmetric, also known as public key encryption, can be used for digital certificates, electronic signatures, and so on 36
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Standards for Encryption and Related Functions Advanced Encryption Standard (AES): NIST-designated standard for encryption and decryption (Daemen & Rijmen, 2002) Transport Layer Security (TLS) and predecessor, Secure Sockets Layer (SSL): Cryptographic protocols that provide security for communications over all points on networks (Rescorla, 2001) Internet Protocol Security (IPsec): Protocol for securing Internet Protocol (IP) communications by authenticating and encrypting each IP packet of a data stream Part of IPv6 but also added as standalone on top of IPv4 Secure Hash Algorithm (SHA): Protocols that ensure integrity of transmitted information and documents (NIST, 2002) Security flaws have been identified in SHA-1, so SHA-2 family of protocols has been developed For more: Secure Hash Algorithm https://en.wikipedia.org/wiki/Secure_Hash_Algorithm NIST’s Cryptographic Toolkit http://csrc.nist.gov/groups/ST/toolkit/index.html 37
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For the Record Best Practices Organizational Information and security governance Confidentiality and security policies and committees Education and training programs Sanctions Patient access to audit trails Management dashboards Risk management and compliance (Committee on Maintaining Privacy and Security, 1997) 38 Technical Authentication of users Audit trails Physical security and disaster recovery Protection of remote access points and external communications Software discipline Ongoing system vulnerability assessment Infrastructure management
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Authentication and Passwords Authentication: Process of gaining access to secure computer Usual approach is passwords (“what you know”), but secure systems may add physical entities (“what you have”) Biometric devices: Physical characteristic (e.g., thumbprint) Physical devices: Smart card or some other physical “key” Ideal password is one you can remember but no one else can guess Typical Internet user interacts with many sites for which he or she must use password “Single sign-on” is commonly used Two-factor authentication 39
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Some Challenges with Passwords Common approach to security is password “aging” (i.e., expiration), which is less effective than other measures (Wagner, Allan, & Heiser, 2005) Session-locking: One or small number of simultaneous logons Login failure lockout: After three to five attempts Password aging may also induce counterproductive behavior (Allan, 2005) 40
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Health Information Security Is Probably a Trade-off Chart. Health information security is a trade-off (CC BY-NC-SA 3.0, 2012). 41
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Privacy, Security, Confidentiality Privacy is the right to keep information to ourselves, whereas confidentiality is the right to keep information about ourselves from being disclosed to others. For many reasons, breaches and disclosures of patient information are increasing. “De-identified” information is not necessarily more secure. Summary 42
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Privacy, Security, and Confidentiality There are many points where information can “leak” out of the system. Many technologies are available for protecting security. Encryption is necessary but not sufficient. Paper-based information has its own security problems. Summary 43
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Privacy, Security, and Confidentiality References Acluvideos. (2009). Scary Pizza [Video file] Retrieved from https://youtu.be/33CIVjvYyEk Acquisti, A., & Gross, R. (2009). Predicting Social Security numbers from public data. Proceedings of the National Academy of Sciences, 106, 10975–10980. Allan, A. (2005). Password aging can burden an already-weak authentication method. Stamford, CT: Gartner. American College of Physicians. (2011). Health information technology & privacy: Position paper. Philadelphia, PA: American College of Physicians. Retrieved from http://www.acponline.org/advocacy/where_we_stand/policy/hit_privacy.pdf American Health Information Management Association. (n.d.). AHIMA consumer health information bill of rights. Retrieved from http://bok.ahima.org/PdfView?oid=107674 American Health Information Management Association. (2003). Flow of patient health information inside and outside the healthcare industry. Retrieved from http://library.ahima.org/PdfView?oid=22958 Bowe, R. (2013). Identity crisis: Organizations are implementing medical identity theft teams to combat rising incidents. Journal of AHIMA, 84(1), 38–42. California Health Care Foundation (CHCF). (2005). National consumer health privacy survey 2005. Oakland, CA: CHCF. Retrieved from http://www.chcf.org/topics/view.cfm?itemID=115694 44
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Privacy, Security, and Confidentiality References Cassa, C., Schmidt, B., Kohane, I., & Mandl, K. (2008). My sister's keeper?: Genomic research and the identifiability of siblings. BMC Medical Genomics, 1(1), 32. Retrieved from http://www.biomedcentral.com/1755-8794/1/32 Cohn, S. (2006). Privacy and confidentiality in the nationwide health information network. Retrieved from http://www.ncvhs.hhs.gov/recommendations-reports-presentations/june-22-2006-letter-to-the-secretary-recommendations-regarding-privacy-and-confidentiality-in-the-nationwide-health-information-network/ Cohn, S. (2008). Individual control of sensitive health information accessible via the Nationwide Health Information Network for purposes of treatment. Retrieved from http://www.ncvhs.hhs.gov/wp-content/uploads/2014/05/080220lt.pdf Committee on Maintaining Privacy and Security in Health Care Applications of the National Information Infrastructure. (1997). For the record: Protecting electronic health information. Washington, DC: National Academies Press. Retrieved from http://www.nap.edu/catalog/5595/for-the-record-protecting-electronic-health-information Conn, J. (2016, February 17). Hospital pays hackers $17,000 to unlock EHRs frozen in “ransomware” attack. Modern Healthcare. Retrieved from http://www.modernhealthcare.com/article/20160217/NEWS/160219920 Daemen, J., & Rijmen, V. (2002). The design of Rijndael: AES—The advanced encryption standard. Berlin, Germany: Springer-Verlag. 45
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Privacy, Security, and Confidentiality References Department of Health, Education, and Welfare. (1979). The belmont report: Ethical guidelines for the protection of human subjects of research. Washington, DC: Department of Health, Education, and Welfare. Retrieved from: https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html Detmer, D. (2010). Activating a full architectural model: Improving health through robust population health records. Journal of the American Medical Informatics Association, 17, 367–369. El Emam, K., Neri, E., & Jonker, E. (2007). An evaluation of personal health information remnants in second-hand personal computer disk drives. Journal of Medical Internet Research, 9(3), e24. El Emam, K., Neri, E., Jonker, E., Sokolova, M., Peyton, L., Neisa, A., & Scassa, T. (2010). The inadvertent disclosure of personal health information through peer-to-peer file sharing programs. Journal of the American Medical Informatics Association, 17, 148–158. European Commission. (2016, February 29). European Commission unveils EU-U.S. privacy shield. Retrieved from http://ec.europa.eu/justice/newsroom/data-protection/news/160229_en.htm European Commission. (2016, March 23). Protection of personal data. Retrieved from http://ec.europa.eu/justice/data-protection/index_en.htm Gostin, L., & Hodge, J. (2002). Personal privacy and common goods: A framework for balancing under the national health information privacy rule. Minnesota Law Review, 86, 1439–1479. Retrieved from http://scholarship.law.georgetown.edu/cgi/viewcontent.cgi?article=1086&context=facpub 46
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Privacy, Security, and Confidentiality References Hall, M., & Schulman, K. (2009). Ownership of medical information. JAMA, 301, 1282–1284. HealthIT.gov. (2013). Federal-state healthcare coordination: Health information security and privacy collaboration (HISPC). Retrieved from https://www.healthit.gov/policy-researchers-implementers/health-information-security-privacy-collaboration-hispc HealthIT.gov. (2016). Your health information rights. Retrieved from https://www.healthit.gov/patients-families/your-health-information-rights Healthcare Information and Management Systems Society (HIMSS). (2015). 2015 HIMSS security survey. Chicago, IL: HIMSS. Retrieved from http://www.himss.org/2015-cybersecurity-survey (full report limited to members only; executive summary available free to download). Herzig, T. (Ed.). (2010). Information security in healthcare—Managing risk. Chicago, IL: Healthcare Information Management Systems Society. Hodge, J., Gostin, L., & Jacobson, P. (1999). Legal issues concerning electronic health information: Privacy, quality, and liability. JAMA, 282, 1466–1471. 47
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Privacy, Security, and Confidentiality References Joint NEMA/COCIR/JIRA Security and Privacy Committee. (2004). Break glass procedure: Granting emergency access to critical ePHI systems. Retrieved from http://hipaa.yale.edu/security/break-glass-procedure-granting-emergency-access-critical-ephi-systems Keteyian, A. (2010, April 15). Digital photocopiers loaded with secrets. CBS News. Retrieved from http://www.cbsnews.com/stories/2010/04/19/eveningnews/main6412439.shtml Kutscher, B. (2016, March 3). Healthcare underspends on cybersecurity as attacks accelerate. Modern Healthcare. Retrieved from http://www.modernhealthcare.com/article/20160303/NEWS/ 160309922/healthcare-underspends-on-cybersecurity-as-attacks-accelerate Lee, C., & Goldfarb, Z. (2006, June 30). Stolen VA laptop and hard drive recovered. The Washington Post, p. A01. Retrieved from http://www.washingtonpost.com/wp-dyn/content/article/2006/06/29/AR2006062900352.html Lumley, T., & Rice, K. (2010). Potential for revealing individual-level information in genome-wide association studies. JAMA, 303, 859–860. Malin, B., & Sweeney, L. (2005). How (not) to protect genomic data privacy in a distributed network: Using trail re-identification to evaluate and design anonymity protection systems. Journal of Biomedical Informatics, 37, 179–192. 48
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Privacy, Security, and Confidentiality References McGuire, A., & Gibbs, R. (2006). No longer de-identified. Science, 312, 370–371. Milken Institute School of Public Health. (2012). Who owns medical records: 50 state comparison. Retrieved from http://www.healthinfolaw.org/comparative-analysis/who-owns-medical-records-50-state-comparison McNabb, J., & Rhodes, H. B. (2014). Combating the privacy crime that can KILL. Journal of AHIMA, 85(4), 26–29. Munro, D. (2015, Dec. 31). Data breaches in healthcare totaled over 112 million records in 2015. Forbes, Pharma & Healthcare. Retrieved from http://www.forbes.com/sites/danmunro/2015/12/31/data-breaches-in-healthcare-total-over-112-million-records-in-2015/#356bb7337fd5 National Academies Press. (1997). For the record protecting electronic health information. Retrieved from https://www.nap.edu/read/5595/chapter/2#4 National Institute for Standards and Technology (NIST). (2015). Secure hash standard. Gaithersburg, MD: NIST. Retrieved from http://nvlpubs.nist.gov/nistpubs/FIPS/NIST.FIPS.180-4.pdf National Institute of Standards and Technology. (2014). Cryptographic toolkit. Retrieved from http://csrc.nist.gov/groups/ST/toolkit 49
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Privacy, Security, and Confidentiality References National Institute of Standards and Technology (NIST). (2014). Framework for improving critical infrastructure cybersecurity. Gaithersburg, MD: NIST. Retrieved from http://www.nist.gov/cyberframework/upload/cybersecurity-framework-021214.pdf Office of the National Coordinator for Health Information Technology (ONC) & Office for Civil Rights. (2015). Guide to privacy and security of electronic health information. Washington, DC: ONC. Retrieved from https://www.healthit.gov/sites/default/files/pdf/privacy/privacy-and-security-guide.pdf Orcutt, M. (2015, Dec. 23). 2015 could be the year of the hospital hack. MIT Technology Review. Retrieved from https://www.technologyreview.com/s/533631/2015-could-be-the-year-of-the-hospital-hack Pabrai, A. (2008, January 23). The single sign-on solution. H&HN’s Most Wired Magazine. Patient Privacy Rights Foundation. (n.d.). Patient privacy rights. Retrieved from https://patientprivacyrights.org Perma, G. (2015, Feb. 5). Anthem hit by large data breach. Healthcare Informatics. Retrieved from http://www.healthcare-informatics.com/news-item/anthem-hit-large-data-brach 50
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Privacy, Security, and Confidentiality References Ponemon Institute. (2015). Fifth annual benchmark study on privacy and security of healthcare data. Retrieved from https://www2.idexpertscorp.com/fifth-annual ponemon-study-on-privacy-security-incidents-of-healthcare-data Pritts, J., & Connor, K. (2007). The implementation of e-consent mechanisms in three countries: Canada, England, and the Netherlands. Washington, DC: Substance Abuse and Mental Health Services Administration. Retrieved from http://ihcrp.georgetown.edu/pdfs/prittse-consent.pdf Privacy Rights Clearinghouse. (2005). Chronology of data breaches. Retrieved from http://www.privacyrights.org/data-breach Privacy Rights Clearinghouse. (2014). Fact sheet 8c: The HIPAA privacy rule: Patients’ rights. Retrieved from https://www.privacyrights.org/content/hipaa-privacy-rule-patients-rights Rescorla, E. (2001). SSL and TLS: Designing and building secure systems. Boston, MA: Addison Wesley. Rindfleisch, T. (1997). Privacy, information technology, and healthcare. Communications of the ACM, 40(8), 93–100. Rodwin, M. (2009). The case for public ownership of patient data. JAMA, 302, 86–88. Rojas-Burke, J. (2006). Providence critics push for safer records. The Oregonian. Rothfeder, J. (1992). Privacy for sale: How computerization has made everyone’ s private life an open secret. New York, NY: Simon & Schuster. 51
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Privacy, Security, and Confidentiality References Rothstein, M., & Talbott, M. (2006). Compelled disclosure of health information: Protecting against the greatest potential threat to privacy. JAMA, 295, 2882–2885. Sequoia Project. (2016). Data use and reciprocal support agreement (DURSA). Retrieved from http://sequoiaproject.org/ehealth-exchange/onboarding/dursa Sweeney, L. (1997). Guaranteeing anonymity when sharing medical data: The Datafly System. Proceedings of the 1997 AMIA Annual Fall Symposium, Nashville, TN, 51–55. Sweeney, L. (2002). k-Anonymity: A model for protecting privacy. International Journal on Uncertainty, Fuzziness, and Knowledge-based Systems, 10(5), 557–570. TEDx Talks. (2104). Designing technology to restore privacy: Deborah C. Peel, MD at TEDxTraverseCity [Video file]. Retrieved from https://www.youtube.com/watch?v=f1JPjLCxPFQ The SANS Institute. (2016). About (SANS). Retrieved from https://www.sans.org/about Tufts University School of Medicine. (2009). Declaration of health data rights. Retrieved from https://sites.tufts.edu/prep/2009/07/07/declaration-of-health-data-rights U.S. Department of Health and Human Services. (2016a). Breaches affecting 500 or more individuals. Retrieved from https://ocrportal.hhs.gov/ocr/breach/breach_report.jsf 52
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Privacy, Security, and Confidentiality References 53 U.S. Department of Health and Human Services. (2016b). Improper disclosure of research participants’ protected health information results in $3.9 million HIPAA settlement. Retrieved from http://www.hhs.gov/about/news/2016/03/17/improper-disclosure-research-participants-protected-health-information-results-in-hipaa-settlement.html# Wagner, R., Allan, A., & Heiser, J. (2005). Eight security practices offer more value than password aging. Stamford, CT: Gartner. White House Office of the Press Secretary. (2015). Fact sheet: President Obama’s precision medicine initiative. Retrieved from https://www.whitehouse.gov/the-press-office/2015/01/30/fact-sheet-president-obama-s-precision-medicine-initiative Wikipedia. (2016). Secure hash algorithm. Retrieved from https://en.wikipedia.org/wiki/Secure_Hash_Algorithm Wright, A., & Sittig, D. (2007a). Encryption characteristics of two USB-based personal health record devices. Journal of the American Medical Informatics Association, 14, 397-399. Wright, A., & Sittig, D. (2007b). Security threat posed by USB-based personal health records. Annals of Internal Medicine, 146, 314–315.
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Privacy, Security, and Confidentiality References Charts, Tables, Figures Figure Adapted from Sweeney, L. (1997). Guaranteeing anonymity when sharing medical data: The Datafly System. Proceedings of the 1997 AMIA Annual Fall Symposium, Nashville, TN, 51–55. Chart. Flow of information in health care (Rindfleisch, 1997). Chart. Health information security is a trade-off (CC BY-NC-SA 3.0, 2012). 54
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This material was developed by Oregon Health & Science University, funded by the Department of Health and Human Services, Office of the National Coordinator for Health Information Technology under Award Number IU24OC000015. This material was updated in 2016 by Bellevue College under Award Number 90WT0002. This presentation was produced with the support of the United States Agency for International Development (USAID) under the terms of MEASURE Evaluation cooperative agreement AID-OAA-L-14-00004. MEASURE Evaluation is implemented by the Carolina Population Center, University of North Carolina at Chapel Hill in partnership with ICF International; John Snow, Inc.; Management Sciences for Health; Palladium; and Tulane University. Views expressed are not necessarily those of USAID or the United States government. www.measureevaluation.org