Some links on privacy of medical records


One student in the course (name, please?) found a web site with a translation of part of the Hippocratic oath, together with a modern version. Some aspects of the privacy controversy are certainly well displayed in the contrasts between these statements.


Whatsoever things I see or hear concerning the life of men, in my attendance on the sick or even apart therefrom, which ought not be noised abroad, I will keep silence thereon, counting such things to be as sacred secrets. Whatever I see or hear in my attendance on the sick or even apart therefrom will be divulged to physicians, nurses, aides, surgeons, anesthesiologists, dietitians, physical therapists, admitting clerks, billing clerks, utilization review personnel, discharge planners, records coders, medical records filing staff, chaplains, volunteers, performance evaluators, insurers, medical transcriptionists, accrediting agencies, public health officials, other government officials, social workers, and employers. AND to whomever else requests them for whatever reason.
[attributed to Dale Miller, Irongate Inc.]

The instructors have compiled a brief list of currently (9/9/99) active links with information and opinions about the privacy of medical records. Each link is accompanied by a brief description written by N. Fefferman, whose valuable efforts are appreciated.

http://www.abanet.org/health/clinical/privacy_links.html
  The American Bar Association's list of web resources on privacy issues in health care. A good list of links from both the medical and legal sides.
http://www.abanet.org/buslaw/efss/privlib.html
  An online privacy and consumer protection library. Reports from various agencies on their findings about privacy protection.
http://www2.echo.lu/legal/en/dataprot/dataprot.html
  European views of regulation and privacy. Links are sorted by country and date.
http://aspe.os.dhhs.gov/datacncl/privbibl.htm
  A report by the U.S. Department of Health and Human Services on methods of protection for personal information and electronic health data.
http://www.cl.cam.ac.uk/users/rja14/policy11/policy11.html
  An analysis by Professor Ross Anderson (Computer Science, Cambridge University) of "Security in Clinical Information Systems". Deals with some of the ethical implications of broadbased medical information retrieval capabilities.
http://www.aha.org/ar/gr_conf.html
  A "statement by the American Hospital Association to the Subcommittee on Government Management, Information and Technology Government Reform and Oversight Committee Re: Medical Records Privacy, H.R. 52".
http://www.epic.org/privacy/medical/
  EPIC's (Electronic Privacy Information Center - a good resource in general once its search engine comes back up!) page on Medical Record Privacy. Many links to related pages and papers. Includes some international references. Well organized in terms of pertinent catagory for the audience: i.e. medical, technical computer science, legal, ethical, practical, political etc.
http://www.ama-assn.org/sci-pubs/journals/archive/jama/vol_276/no_23/mn6213.htm
  An essay/interview on the subject of medical privacy rights in the Journal of the American Medical Association
http://www.eff.org/pub/Privacy/Medical/
  The Electronic Frontier Foundation. An archive of papers and reports on Medical and Psychiatric Records and Drug Testing. Includes some actual bills having to do with regulation and disclosure laws.
http://www.senate.gov/~rockefeller/medrec.html
  An essay on medical records privacy. Discussion from the standpoint of: "poor lawmakers have to figure out what to do with this tough subject".
http://www.efc.ca/pages/media/cp.03sep98.html
  A news article in The Canadian Press on legislation to protect the privacy of medical records in Canada.
http://www-hsl.mcmaster.ca/tomflem/privacy.html
  A page dealing with privacy geared towards informing the doctor-going public.
http://www.aafp.org/gov/fed/privacy.html
  The American Academy of Family Physicians guide to medical records privacy. Includes a really interesting chart of "operational guidelines" for physicians.
http://dir.yahoo.com/Health/Health_Care/Patient_s_Rights/Medical_Records_Privacy/
  Exactly what it looks like: the Yahoo search engine page returned when you follow the links from health to privacy along the url path. A wide range of papers from different perspectives.
http://www.aclu-wi.org/issues/data-privacy/reportx.html
  The American Civil Liberties Union of Wisconsin weighing the pros and cons of the situation for you from a "union-like" (surprise) standpoint.
http://www.cptech.org/privacy/medical.html
  The Consumer Project on Technology's home page of links -- like a Consumer Reports for buyers of privacy. An odd but effective set of references.
http://special.northernlight.com/privacy/medical_recs_online.htm
  A news report of another way we probably hadn't thought of that medical records can be harmful to the unprotected average person.
http://www.massmed.org/physicians/pubs/privacy/privacy.html
  The Massachusetts Medical Society policy and set of guidelines for its employees on how to deal with the issues of privacy.
http://www.unimaas.nl/~privacy/privacy1.htm
  In Dutch, mostly. Actually, my Dutch isn't that good. Sorry.
http://www.ncb.gov.sg/nii/96scan9/ytemr.html
  From Singapore (in English!). Examines very interesting perspectives on the issue of what can be done with medical records once they already exist: who owns them, who can read them and why, who should be able to use them and for what, who is in trouble if they are wrong?
http://www.argiropolis.com.ar/secciones/biotecnologia/genes/cap5.htm
  Discussion of medical information in support of police efforts.


Other web sites suggested by students are listed below. Other additions to this list are welcome.

http://www.privacyrights.org/privprin.htm
  A discussion culminating in a statement summarizing the privacy rights what this advocacy group urges.
http://wings.buffalo.edu/faculty/research/bioethics/privacy.html
  A page of links to "Confidentiality and Medical Records Privacy Resources"
http://www.amcity.com/kansascity/stories/1997/04/28/story4.html
http://www.amcity.com/triangle/stories/1997/07/21/smallb3.html
http://www.amcity.com/sacramento/stories/1999/04/05/focus4.html
http://www.amcity.com/albany/stories/1998/12/14/focus2.html
http://www.amcity.com/triangle/stories/1998/09/07/editorial4.html
http://www.amcity.com/wichita/stories/1998/03/09/focus3.html
  Medical record privacy examined in articles taken from regional business newspapers in several areas of the country. An interesting and different point of view.


Maintained by greenfie@math.rutgers.edu and last modified 9/11/99.