How and Why
I. How and why did health care privacy issues become important with the increased implementation of Internet technology?
a. A brief history--one family doctor, few specialists, people were not as nomadic. Hippocratic Oath (1, 2)
b. Public Health Depts (3, 4) http://www.cdc.gov/mmwr/preview/mmwrhtml/m2e411a1.htm
c. What were some of the landmark events that affected societal views of medical privacy?
Griswold v. Connecticut: http://www.phschool.com/atschool/supreme_court_cases/griswold.html
Health privacy issues were in the news again in the early 1980s (5) with the identification in 1981 ofAcquired Immune Deficiency Syndrome (AIDS).
A director of underwriting at LifeIns (a ficticious company name used in a study on privacy management) remarked:
“AIDS has moved the privacy/confidentiality [debate] to a different plane, since there are so many issues involved. Of course, we need information about applicants’ health conditions – AIDS being just one example – to determine the risks. Economically, we can’t ignore this. Today, about 1.5 percent of claims are AIDS-related; but, assuming no cure, that number will rise to 10 percent by the year 2000. … But what about privace of test results? What kind of disclosures need to be made ahead of time? How do you store the information, and to what extent do you release it? What kind of counseling do we need to do for people who test positive?”
More on AIDS as a public health reporting issue:
How to find reliable HIV/AIDS information on the Internet: http://www.orau.gov/meo/manuals/treatment/
d. System Characteristics when medical
information filed electronically.
Health care providers and insurance companies took the opportunity to reduce overhead and improve patient education(6)
The most enticing aspects of Intranets, Internets and Extranets is reduced overhead associated with the administration of the environment. Much less costly to maintain than the other three-tier client/server architectures.
Economic and practical trends in Internet usage for healthcare is driving many delivery systems to create more educational materials for both consumers and clinicians. (Clinicians often cannot answer consumers’ questions, so they’d better be prepared!)
e. Dynamic exchange of data input and output possible making Nets complementary to other Health Information systems. (7)
f. Technological possibilities and
market pressures (8)
Filing health claims more efficiently is generally a win-win opportunity to get paid quicker and free up time for research. However, consider the ethics implications when improved availability of performance data makes it much easier to ranking hospitals based on “efficiency.”
While medical and insurance communities have been relatively “good” handling confidential data, technological and market pressures have pushed them over the edge.
g. Collection Sharing, new uses (marketing and genomics) (9)
Laboratory tests to detect abnormal genes-- Human Genome Project 1988- to run 15 years– DNA sequence -- but measures the probability of contracting a disease, not a confirmation that the patient will get it.
h. Health care industry estimated spending on information technology in 1996 (10) $10-15 billion.
Technical and organizational practices involve the trade offs of cost, complexity, and the degree of privacy provided. (This is our "pick two out of three" triangle.)
j. Recommend a review of the link to Health Privacy 101 and two links there:
PowerPoint presentation, HealthPrivacy 101 slide show (especially slide #8 to see how many places your health information may travel)
k. Discussion of ethics of electronic patient records covered thoroughly in Kluge (11)– consider the records as very disjointed pieces of information!
Medical data is unusual compared to other personal data collected. With medical data there is a large inventory of accepted uses and many authorized users. Everyone does not need access to it all and not all data are equally sensitive.
Many users are not bound by the professional ethics, culture and customs of the hysician. This is the reason consistent laws are needed.(12)
Not convinced? Do you think it couldn't happen to you? Or has it already happened?
Read these horror stories at:
http://www.healthprivacy.org
Click on health policy 101, then link to medical privacy stories OR link to
some of the same ones here
then go to page 27 in PDF, which is numbered as page 22 in the printed report.