Increasing Public Awareness and Provider Education About Primary Immunodeficiency Disease - The purpose of this program is to continue to strengthen the nation’s capacity to carry out public health activities in Primary Immunodeficiency (PI) by increasing physician knowledge and public health awareness through educational programs for PI, and to build upon the successes of the program over the last three decades. The primary objective of this effort is to disseminate educational information on a national level to healthcare providers, educators, third-party payers, impacted families, and others who may help to expedite clinical recognition and improve health outcomes for individuals living with PI. The proposed program will ultimately achieve a marked increase in the number of people appropriately diagnosed with PI, and an increase in access to care for those individuals properly diagnosed, resulting in improved health outcomes and quality of life. To accomplish these objectives, the proposed program will lead to improved integration of PI awareness into clinical care, expedited clinical recognition of PI, and increased community and healthcare provider knowledge of PI. These aims will be achieved through the development and implementation of PI focused educational materials and displays, provider engagement in educational opportunities, an increase in the skills and knowledge of the healthcare workforce regarding PI, and the use of evaluation and quality improvement process findings to guide appropriate action. The following strategies and activities will be utilized to accomplish the intended outcomes: (1) provide financial assistance for planning, design, and implementation of educational materials and displays, including a national public service advertising campaign; (2) disseminate educational information on a national level to public and private healthcare providers, clinical and school nurses, educators, third-party payers, impacted families, and others; (3) form partnerships with the healthcare community; and (4) conduct regular evaluation and quality improvement efforts. To expedite identification and diagnosis of PI, two additional initiatives will be implemented: (1) integration of a proprietary software that has been and is being utilized with healthcare databases to identify patients with a probable underlying PI and (2) a genetic sequencing program to identify the underlying cause of a PI and better bridge genotype/phenotype awareness. We will continue to strengthen and expand existing programs that have proven effective and implement new and promising initiatives, driving programs forward to ensure the best possible outcomes for patients living with PI.
