NRPM: Standards for Privacy of Individually Identifiable Health Information. Footnotes:

11/03/1999

1 Janlori Goldman, Institute for Health Care Research and Policy, Georgetown University: www.healthprivacy.org/resources.

2 Health Data Directory, Faulkner & Gray; 1999 Edition, pp 22-23.

3 Health Care Finance Administration, Office of the Actuary, 1997.

4 American Cancer Society. http://www.cancer.org/statistics/97cff/97facts.html

5 John Hornberger et al, "Early treatment with highly active anti-retroviral therapy (HAART) is cost-effective compared to delayed treatment," 12th World AIDS conference, 1998.

6 Ibid, Goldman, p. 6.

7 “Practice Briefs,” Journal of AHIMA; Harry Rhodes, Joan C. Larson, Association of Health Information Outsourcing Service; January 1999.

8 Ibid, Goldman, p.20.

9 Ibid, Goldman, p.21.

10 “Medical records and privacy: empirical effects of legislation; A memorial to Alice Hersh”; McCarthy, Douglas B; Shatin, Deborah; et al.. Health Service Research: April 1, 1999; No. 1, Vol. 34; p 417. The article details the effects of the Minnesota law conditioning disclosure of protected health information on patient authorization.

11 Source Book of Health Insurance Data: 1997-1998, Health Insurance Association of America, 1998. p. 33.

12 We have used two different data sources for our estimates of the number of entities. In the regulatory impact analysis (RIA), we chose to use the same number of entities cited in the other Administrative Simplification rules. In the regulatory flexibility analysis (RFA), we used the most recent data available from the Small Business Administration (SBA).

We chose to use the Administrative Simplification estimates in the RIA because we wanted our analysis to be as consistent as possible with those regulations. We also believe that because the Administrative Simplification numbers are higher than those in the SBA data, it was the more conservative data source.

13 We have not included the 3.9 million “other” employer health plans listed in HCFA’s administrative simplification regulations because these plans that are administered by a third party. The proposed regulation will not regulate the employer-plans but will regulate the third party administrators of the plans. Because plan administrators have already been included in our analysis, these other employer-sponsored plans will not incur additional costs.

14 These costs only represent those of public entities serving in the role of provider or plan. The federal costs only reflect those incurred by a provider and plan offering Medicaid or Medicare, and hospitals run by the federal government including those run by the Veteran’s Administration and the military. Federal enforcement and other costs are not included. These estimates do not reflect any larger systems changes necessary to running federal programs. Likewise State costs are incorporated to the extent that States serve as providers or plans (including Medicaid).

15 Health Care Finance Administration, Office of the Actuary, 1997.

16 Equifax-Harris Consumer Privacy Survey, 1994

17 Consumer Privacy Survey, Harris-Equifax, 1994, p vi

18 Promoting Health: Protecting Privacy, California Health Care Foundation and Consumers Union, January 1999, p 12

19 Health Information Privacy Survey, Harris-Equifax, 1993, pp 49-50

20 American Cancer Society. http://4a2z.com/cgi/rfr.cgi?4CANCER-2-http://www.cancer.org/frames.html

21 American Cancer Society. http://www.cancer.org/statistics/97cff/97facts.html

22 American Cancer Society. http://www.cancer.org/statistics/97cff/97facts.html

23 American Cancer Society. http://www.cancer.org/statistics/97cff/97facts.html

24 Avon’s Breast Cancer Crusade. http://www.pmedia.com/Avon/library/faq.html

25 Ovarian Cancer National Alliance. http://www.ovariancancer.org/index.shtml

26Cancer Statistics, 1999, Landis, Murray, Bolden and Wingo. CA: A Cancer Journal for Clinicians, Jan/Feb, 1999, Vol 49, No.1

27 Ovarian Cancer National Alliance. http://www.ovariancancer.org/index.shtml

28 Breast Cancer Information Service. http://trfn.clpgh.org/bcis/FAQ/facts2.html

29 Promoting Health: Protecting Privacy, California Health Care Foundation and Consumers Union, January 1999, p 13

30 For example, Roger Detels, M.D., et al., in “Effectiveness of Potent Anti-retroviral Therapy...” JAMA, 1998;280:1497-1503 note the impact of therapy on HIV persons with respect to lengthening the time to development of AIDS, not just delaying death in persons who already have AIDS.

31 John Hornberger et al, "Early treatment with highly active anti-retroviral therapy (HAART) is cost-effective compared to delayed treatment," 12th World AIDS conference, 1998.

32 Sexually Transmitted Diseases in America, Kaiser Family Foundation, 1998, p 12

33 Standard Medical information; see http://www.mayohealth.org for examples.

34 Disease-Specific Estimates of Direct and Indirect Costs of Illness and NIH Support: 1997 Update, 1997.

35 The Small Business Administration defines small businesses in the health care field as those generating less than $5 million annually. Small businesses represent approximately 85% of health care entities.