II 111th CONGRESS 1st Session S. 792 IN THE SENATE OF THE UNITED STATES April 2, 2009 Mr. Sanders introduced the following bill; which was read twice and referred to the Committee on Health, Education, Labor, and Pensions A BILL To amend the Public Health Service Act to improve the National Program of Cancer Registries by expanding data collection and allowing data sharing for public health objectives, while preserving the confidentiality of patients, and for other purposes.

1.

Short title

This Act may be cited as the Improvement of the National Program of Cancer Registries Act.

2.

Findings and purpose

(a)

Findings

Congress finds as follows: (1)The National Program of Cancer Registries, established in 1992 by the Cancer Registries Amendment Act (Public Law 102–515; 106 Stat. 3372), has enabled each of the 50 States to maintain a functioning cancer registry. (2)Over the past 15 years, the Centers for Disease Control and Prevention has enhanced central cancer registries and helped to establish standards for quality and completeness of such registries. (3)The statewide, population-based cancer registries collect information on cancer incidence and mortality rates, which may be used for identifying cancer patterns and trends and for directing cancer control interventions. (4)The States rely on electronic records, especially electronic laboratory records, for the majority of data collection for the cancer registries. (5)The States do not have adequate resources to access all of the records of physicians, hospitals, outpatient clinics, nursing homes, and other agencies providing services to cancer patients that would assist in identifying characteristics of each patient and treatment of the cancer. (6)Laboratories do not systematically collect or record essential data, including information on the occupation, socioeconomic status, or treatments of, or environmental factors affecting, cancer patients, and thus cancer registries, which depend in part upon records of laboratories, do not have essential data that would help determine causes or contributory causes of cancers. (7)The National Program of Cancer Registries has established standards for collecting information but has not established standards that allow data exchange with other disease registries. (8)Information collected by cancer registries must be exchanged with other disease registries in a confidential and secure manner in order to prevent information about patients from being used for purposes other than medical treatment, medical research, or public health. (b)

Purpose

The purpose of this Act is to improve the National Program of Cancer Registries by expanding the data elements collected, enhancing the quality of information collected, and collecting data such that the National Program of Cancer Registries preserves the confidentiality of patients while allowing data sharing for public health objectives.

3.

Amendments to the National Program of Cancer Registries

(a)

Enhancing data collection

Section 399B(a)(1) of title III of the Public Health Service Act (42 U.S.C. 280e(a)(1)) is amended— (1)in the matter preceding subparagraph (A), by striking registries to collect, for each condition specified in paragraph (2)(A), data concerning, and inserting cancer registries in order to collect, for each form of in-situ and invasive cancer (with the exception of basal cell and squamous cell carcinoma of the skin), data in a standardized manner concerning; (2)by striking subparagraph (B) and inserting the following: (B) information on the industrial or occupational history of adult individuals with the cancers, using the Federal Standard Occupational Classification system; ; (3)in subparagraph (D), by striking and after the semicolon; (4)by inserting after subparagraph (D) the following: (E)the highest level of education attained by adult individuals with the cancers; (F)sources of payment by individuals with cancer for costs associated with cancer diagnosis and treatment; (G)history of alcohol and tobacco use by individuals with cancer; and ; and (5)by redesignating subparagraph (E) as subparagraph (H). (b)

Establishing data collection standards

Section 399B of title III of the Public Health Service Act (42 U.S.C. 280e) is amended by inserting at the end the following: (f)

Data collection standards

(1)

In general

The Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall— (A)develop standards for collection of each data element for the State cancer registries assisted under this section; (B)develop inter-operability and security standards for data exchange and integration between— (i)the cancer registries of 2 or more States; and (ii)any cancer registry and another Federal registry for non-cancer diseases that contains data concerning individual patients; and (C)provide a basic electronic collection tool, to facilitate standardized data collection, available to each State to use for cancer registries. (2)

Assurances

Each applicant, prior to receiving Federal funds under the Improvement of the National Program of Cancer Registries Act, shall provide assurances satisfactory to the Secretary that the applicant will comply with standards developed under paragraph (1). (3)

Coordination with other Federal programs

To promote the greatest possible efficiency and effectiveness in the collection of data for federally-supported cancer registries, the Secretary shall facilitate appropriate coordination of the National Program of Cancer Registries under this part with other federally-supported registry programs, including infectious disease registries, environmental disease registries, and other non-cancer, chronic disease registries. .

4.

Authorization

To carry out this Act, there are authorized to be appropriated $100,000,000 for each of the fiscal years 2010, 2011, 2012, and 2013.