108th Congress

Patient Navigator, Outreach, and Chronic Disease Prevention Act of 2003

H.R. 918 and S. 453

Background

Because health care is fragmented and there is limited support for patients and their families, there is a need to explore ways to assist patients and their families in negotiating the health care system, especially among underserved populations. The "patient navigator" concept is one potential model for managing aspects of patient care; this model can potentially prevent vulnerable populations from slipping through the cracks, resulting in substandard care or patients' leaving the health care system completely. In the area of cancer, the National Cancer Institute (NCI) is currently supporting research on the effectiveness of the navigator model. The outcome of this research may lead to the development of evidence-based models of intervention to improve health outcomes of cancer patients.

H.R. 918 and S. 453 were introduced by Representative Robert Menendez (D-NJ) and Senator Kay Bailey Hutchison (R-TX), respectively, to address the disparity in the burden of illness and death borne by minority populations, the poor, and other at-risk populations. The legislation specifically authorizes NCI to sponsor patient navigator models for care across the cancer continuum (from abnormal finding to end of life).

The Hispanic Health Improvement Act (H.R. 2258/S. 1159) and the National Cancer Act (S. 1101) contain a patient navigator section with similar provisions as H.R. 918 and S. 453. (For more information, see these articles.)

Provisions of the Legislation/Impact on NIH

Model Programs: This legislation would authorize NCI, Health Resources and Services Administration (HRSA), and Indian Health Service (IHS) to award grants for model programs that provide prevention, early detection, treatment, and appropriate followup care services for individuals from health disparity populations with cancer or chronic diseases. Health disparity populations are defined as a population (including medically underserved groups, such as rural and low-income individuals and individuals with low levels of literacy) in which there exists a significant disparity in the overall rate of disease incidence, morbidity, mortality, or survival rates as compared with the health status of the general population. The term specifically includes American Indians, Asian Americans, Native Hawaiians and other Pacific Islanders, Blacks, and Hispanics (with origins from Mexico, Puerto Rico, Cuba, Central or South America, or any other Spanish-speaking country).

• Provision of health services for individuals in a culturally competent manner would be required, and patient navigators would be assigned to assist these individuals in managing their care for the duration of their participation in the model program.
• For the NCI model program, eligible entities would include NCI centers, academic institutions, IHS clinics, tribal governments, urban Indian organizations, tribal organizations, hospitals, qualified nonprofit entities that partner with one or more centers providing health care that will provide patient navigation services, or any other public or private entity deemed appropriate by the Director of NCI.
• Grantees would be required to collect patient data and establish and implement procedures to ensure the confidentiality of all information shared by program participants. Grantees would also be required to submit an annual report to the Secretary of Health and Human Services (HHS) that summarizes and analyzes the data and provides information on the need for navigation services, types of access difficulties resolved, and sources of repeated resolution and flaws in the system of access, including insurance barriers.
• Grantees would be required to provide ongoing culturally competent outreach activities to inform the general public and the community of the program's services. The Director of NCI would be required to evaluate the effectiveness of the outreach activities and disseminate the findings.
• The Secretary of HHS would be required to coordinate NCI, HRSA, and IHS model programs with each other and with prevention center programs carried out by the Centers for Disease Control and Prevention.

Patient Navigator Programs: NCI, HRSA, and IHS IHS would be required to award grants for the development and operation of programs for patient navigators who would assist and guide patients with cancer or chronic diseases.

• Grant recipients would be required to develop model practices for patient navigators.
• Patient navigators would be required to manage an individual's care for the duration of the receipt of health care services, provide case management and psychosocial assessment and care, and have direct knowledge of the communities they serve to ensure that services are culturally competent.
• The Director of NCI would be required to evaluate the effectiveness of patient navigator services and disseminate the findings to public and private entities.
• The Secretary of HHS would be required to coordinate the NCI and HRSA programs.
• Grantees would be required to collect patient data and establish and implement procedures to ensure the confidentiality of all information shared by program participants. Grantees would also be required to submit an annual report to the Secretary of HHS that summarizes and analyzes the data and provides information on the need for navigation services, types of access difficulties resolved, and sources of repeated resolution and flaws in the system of access, including insurance barriers.

For both programs, grant recipients would be required either to charge fees for the provision of health care services related to the prevention and treatment of disease that are consistent with locally prevailing rates or to cover reasonable costs of operation for these programs. Fees would be discounted based on the ability of the patient to pay for the services.

No later than 5 years (3 years for S. 453) after the date of enactment, the Director of NCI would be required to develop a peer-reviewed model of systems for the services provided by this legislation. The Director of NCI would also be required to keep the model current to ensure that the best practices are being used.

Duration of the grants for both the model and patient navigator programs would not exceed 5 years.

Both the model and patient navigator programs would be authorized such sums as may be necessary for each of the fiscal years 2004 through 2008. These authorizations would be in addition to appropriations already made available.

Status and Outlook

H.R. 918 was introduced on February 26, 2003, by Representative Menendez and was referred to the House Committees on Energy and Commerce and on Resources.

S. 453 was introduced on February 26, 2003, by Senator Hutchison and was referred to the Senate Committee on Health, Education, Labor and Pensions.