Privacy and Security for Medical Information Systems
"Seizing the Opportunity: The Power of Health Information"
AHIMA National Convention
Las Vegas, Nevada
October 1994
Marc Rotenberg, director
Electronic Privacy Information Center
rotenberg@epic.org
[Keynote Address]
Medical Record Contents
- Patient's name, address, age, next of kin, SSN
- Name of parents, date and place of birth
- Marital status, religion, military service
- Medical, social and family history
- Treatments, medications, diagnosis
- Findings, reactions, incidents
- Use of alcohol and tobacco
"A complete medical record may contain more intimate details about an
individual than could be found in other single document"- House staff member
Bob Gellman
Risks of Misuse of Medical Data
- Improper treatment
- Loss of employment
- Loss of insurance
- Loss of privacy
- Reluctance to obtain medical care
Privacy protection is critical for delivery of
health care services
Policy Context
- Rapid technological changes (smart cards)
- Growth of computer networking (information highway)
- Health care reform is (still) top legislative priority
- Public concern about privacy protection at all time high: 51% of
- Americans are "very concerned" about loss of privacy [Harris poll]
Medical record privacy is the most important
privacy issue of the 1990s
Key Policy Issues
- Protect privacy and security
- Enforce Code of Fair Information Practices
- Control secondary use
- Control use of identifier
- Ensure patient right of access
- Ensure oversight and enforcement
Medical record privacy is the most complex
privacy issue of the 1990s
Privacy and Security
Security
- Protect system
- Prevent unauthorized use
- Prevent deliberate denial of service
Privacy
- Protect interests of data subject
- Ensure accuracy of data
- Ensure fairness, access for data subject
Good record policies protect privacy and security
Code of Fair Information Practices
- Responsibility of data holders (health care organizations) to data subjects (patients)
- Limitations on disclosure and use
- Obligation to keep data timely, accurate, complete
- Obligation to inform data subject about use of personal information and provide opportunity to correct information
- Basis of most privacy codes and privacy laws
Fair Information Practices establish responsibilities
for data collectors and rights for data subjects
Control Secondary Use
Assume protection of record. Disclose only if:
- To other Health Data Organizations with comparable protection
- To individual
- To parents of minor child, guardians
- To researchers
- To practitioner with informed consent or without informed consent if life-threatening situation
"Function creep" is always a risk with information systems containing personal data
Control Use of Identifier
Problems with Social Security Number (SSN)
- Private investigator: "If I have your SSN, I have everything"
- Imperfect identifier
- Facilitates matching between data sets
- Contributes to banking and credit fraud
- Leads to loss of control of information
Special legal and administrativesafeguards are
necessary for the SSN
Patient Rights of Access
- "The patient has the right to obtain from physician current
information concerning diagnosis, treatment, and prognosis in terms
the patient can understand" [AHA, AHIMA]
- Opportunity to ensure accuracy and verify changes
- Know what will be obtained by employers and insurance companies when release is authorized
- Analogy Ð Bank statement provides detailed record on financial
transactions
PatientÕs right of access is a critical part of
privacy protection
Oversight and Enforcement
- Administrative practices
- Education and training
- Legal obligations
- Legal penalties
- Agencies and oversight
Good policies need good oversight
Administration's Privacy Goals (1993)
- Establish national privacy safeguards
- Establish effective mechanisms for enforcement
- Establish a Data Protection and Security Panel
- Establish an education and awareness program
- Strong privacy, confidentiality and security protection
- National standards for clinical and administrative data
- Uniform minimum health data sets with standard data items and
- definitions
General agreement on privacy goals
AHIMA Privacy Policies
- Emphasize importance of patient record
- Promote patient access to record
- Provide notification of record use
- Develop standards for information practice
- Establish clear rules for use and disclosure
- Implement Model Guidelines
AHIMA approach provides good basis for patient
record privacy
Legislation: HR 4077
- "Fair Medical Information Practices Act"
- Most ambitious privacy legislation in USA to date
- First comprehensive federal, medical privacy initiative since 1979
- Focus on responsibilities of data holders
- Incorporates many principles described above
- Linked to health care reform legislation
- Bill did not pass in 103rd Congress
Medical privacy legislation is still needed
New Challenges
- Databases (1970s) -> data networks (1990s)
- New technologies
- New applications
- New policies
- New issues
- New challenges
Consider always the privacy interests of the data subject
1970s Model
- Database containing personal information
- Articulate rights and responsibilities
- Emphasis on Code of Information Practices (ÒCFHIPÓ)
- Limitations on disclosure
- Controls on identifier (SSN)
- Private actions for enforcement
Problems with 1970s Model
- Enforcement of Code is critical
- "Race to the bottom," particularly in competitive markets
- Burden on individual to ensure enforcement
- Focus on regulation of data Ð containing risk Ð not system design
Privacy as one of several competing interests
New Issues for the 1990s
- Growth of Data Networks
- "Technologies of privacy" (encryption). Who builds locks? Who controls keys?
- Identity, anonymity, and pseudonyms
- Data source identification
- Anticipate specific misuse: commercial sale, employment determination
Privacy as a "necessary precondition"
Predictions
- Passage of federal medical privacy legislation before end of 1996
- Development of new technologies that raise new privacy issues (collection of genetic data, use of smart cards)
- Growing public concern about use and misuse of personal (1995 Harris poll - 55% very concerned?)
- Growing importance of organizations such as AHIMA in protecting privacy of medical record information
Bibliography
- Chaum, Achieving Electronic Privacy (Scientific American 1992)
- Records, Computers, and the Rights of Citizens (1973)
- Institute of Medicine, Health Data in the Information Age (1994)
- Office of Technology Assessment, Protecting Privacy in Computerized Medical Information (1993)
- Rotenberg, Medical Record Privacy, Journal of Health Politics, Policy and Law (1994)
- Westin, Health Information Privacy Survey (1993)
- The White House, The President's Health Security Plan (1993)
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