I. Mission

The Clinical Research Center is the clinical research facility of the National Institutes of Health. It provides patient care, services, training and the environment in which NIH clinician-scientists creatively translate emerging knowledge into better understanding, detection, treatment and prevention of human diseases for the health of a diverse nation.

The overarching objectives of the NIH Clinical Center's efforts at reducing health disparities are recruitment of patients to support Institute studies targeted to diseases prevalent in minority populations and provision of outreach/education programs to address minority health issues. Therefore, consistent with its mission of support, the NIH Clinical Center's efforts at reducing health disparities do not include specific areas of scientific focus or research but rather outline goals aimed at providing a robust infrastructure and launching outreach activities in support of the clinical research sponsored by the Institutes.

II. Infrastructure/Cross-Cutting Issues

The NIH Clinical Center (CC) established a Patient Recruitment and Public Liaison Office in 1997 to support the Institutes in their individual efforts at patient recruitment, including minorities, to clinical research protocols. The office, serving as the central location for the dissemination of protocol information for the intramural program, is responsible for ensuring easy and equitable access to the organization and its services.

Actions:

• Provide translation services to explain protocols to callers for whom English is a second language.
  
  
• Maintain ethnically diverse staff in Office of Patient Recruitment and Public Liaison to deal with cultural differences sensitively and appropriately.
  
  
• Develop database to:
  • collect patient demographic data for all intramural protocols;
    
    
  • disseminate demographic information to Institutes for tracking of minority patient referrals and rates of accrual to protocols; and,
    
    
  • evaluate minority recruitment strategies by tracking the number of minorities who annually contact the Office of Patient Recruitment and Public Liaison, are referred, and enrolled in a protocol.

Individuals of non-Caucasian ancestry have tissue antigen types (HLA or human leukocyte antigens, also known as transplantation antigens) that are substantially different from the HLA types of Caucasian persons of European descent. HLA compatibility is important in obtaining compatible platelet transfusions for patients who are alloimmunized, and in finding HLA matched unrelated bone marrow donors for patients awaiting hematopoietic transplantation. In particular, persons of African American or Asian ancestry are much more likely to find a matched blood or marrow donor among individuals of the same ancestry.

Actions:

• Provide HLA compatible blood and marrow components from minority donors sufficient to meet the needs of minority patients by:
  • establishing a minority recruitment, education, and counseling program within the NIH Marrow Donor Center, a participating center in the National Marrow Donor Program (NMDP);
    
    
  • hiring two FTE of minority background (one African American and one Hispanic American) to perform specific minority-targeted recruitment of potential marrow donors;
    
    
  • develop language-appropriate educational materials to aid in recruitment of minority marrow donors and broadcasting periodic public service announcements on the need for minority marrow donors; and
    
    
  • monitoring proportion of minority donors enrolled in the NIH Marrow Donor Center registry. Currently, 20,149 out of 50,042 individuals, or 40% are enrolled. This is one of the highest proportions of minority donors in any NMDP Center in the country.
    
    
• Establish a recruitment program targeting HLA-typed plateletpheresis donors of minority background.

In the health-care industry there remains a history of underrepresented minorities in professional positions. In order to successfully address this disparity, the number of health care providers of diverse backgrounds must increase so that the needs of patients are appropriately met through individual interactions with health care providers with whom they are easily able to identify. Once the number of minority employees in professional positions increases, there must be a plan to retain them and provide equal access to educational and career opportunities.

Actions:

• Recruit and retain a workforce that represents the diversity of our nation by:
  • building relationships with academic and professional organizations to recruit a diverse workforce
    
    
  • developing a targeted recruitment plan for occupations with significant under-representation of minorities

   

III. Public Information/Outreach

Focus group research conducted by the NIH Clinical Center demonstrated that national and local awareness about the NIH Clinical Center, especially among minorities, is low. People are unaware that the NIH Clinical Center is a research hospital or, they are under the impression that research is conducted only on rare or terminal illnesses. Additionally, minorities have many negative perceptions regarding participation in clinical research. An outreach and education effort, employing multiple outlets (community presentations, internet and the media) is critical to increase public awareness about the NIH Clinical Center, correct misinformation, and foster positive perceptions.

Actions:

• Increase recognition of the NIH Clinical Center among the minority public and referring physicians through the promulgation and utilization of a "brand" and tag line for the NIH Clinical Center.
  
  
• Conduct periodic mailings to inform minority physicians about research in their areas of interest/expertise.
  
  
• Conduct surveys of referring physicians for perceptions of minority access to and patient care within the NIH Clinical Center.
  
  
• Present NIH Clinical Center video on minority patient recruitment to community organizations to increase understanding of the clinical research process.
  
  
• Disseminate multilingual print materials to increase awareness of the NIH Clinical Center among those for whom English is a second language.
  
  
• Target minority media, newspapers, and magazines to place human interest stories about patients and other information about the NIH Clinical Center.

Actions:

• Plan "Medicine for the Public" lecture series in collaboration with the Institutes to target lectures to areas of research in health disparities.
  
  
• Distribute "Medicine for the Public" information to minority schools, community groups, health fairs, and health-care facilities.

Actions:

• Establish a network of community advocates through the development of a Community Leadership Alliance, consisting of leaders from minority organizations, to assist the NIH Clinical Center in reaching out to and understanding the needs of minority populations.
  
  
• Conduct presentations at minority community organizations to address issues of concern related to participation in research.
  
  
• Disseminate information about the NIH Clinical Center and participation in clinical research to: corporations who employ a diverse workforce; minority businesses; and, minority education and church groups.
  
  
• Establish ongoing working relationships with minority professional healthcare organizations such as the National Medical Association.

Monthly satellite broadcasts, sponsored by Healthcare Management Television CenterNet in cooperation with the Association of Academic Health Centers, are coordinated within the NIH Clinical Center. This program, NIH Clinical Center Roundtable, was developed for practicing physicians and is broadcast to 1,800 medical centers and hospitals around the country. It spotlights translational research likely to impact day-to-day clinical practice and includes programs focused on prevalent diseases in minority communities.

Actions:

• Expand monthly broadcasts of NIH Clinical Center Roundtable programs to physiciansÕ homes nationally through cable television. Included in the target audience for these programs will be minority health care professionals.
  
  
• Incorporate research efforts on diseases of interest to underrepresented minorities as a focal area in NIH Clinical Center Roundtable programs.
  
  
• Conduct web-based continuing medical education (CME) teleconferences with minority physicians about research in their areas of interest.
  
  
• Provide training/career development on health disparities for health care professionals from a clinical bioethics perspective through provision of a seminar series on health disparities for clinical bioethics fellows in collaboration with the Greenwall fellows at Johns Hopkins University and the graduate philosophy students at Georgetown. Provide a one-day conference for NIH investigators in October 2000 on Health Disparities.

Research on health disparities requires increasing numbers of minority physicians leading clinical trials. To facilitate this goal, the NIH Clinical Center will make a concerted effort to enhance enrollment of minorities in its clinical research curriculum. Since 1995, the NIH Clinical Center has offered a training program in clinical research, Introduction to the Principles and Practice of Clinical Research. Throughout the past five years the scope of the curriculum has expanded and participants now attend the program both in person and via satellite broadcasts (with five locations including the University of Puerto Rico). Enrollment has increased exponentially each year. In addition, three other courses are now sponsored by the NIH Clinical Center. An experiment in distance learning designed to strengthen training opportunities in clinical research is a degree-granting collaboration between the NIH Clinical Center and Duke University. In its second year, this course is designed primarily for clinical fellows and other health professionals who are training for careers in clinical research. A second course, the Principles of Clinical Pharmacology, also in its second year is based on a series of lectures covering the scientific basis of the discipline of clinical pharmacology. This course is teleconferenced to two sites. The third course, the Ethical and Regulatory Aspects of Human Subjects Research offers education and training in research ethics for intramural scientists and research staff. Enrollment in this course increased from 130 in 1998 to 170 in 1999.

Action:

• Introduction to the Principles and Practice of Clinical Research: For the 1999/2000 academic year, a partnership with the Medical Sciences Campus at the University of Puerto Rico (UPR) allowed videoconferencing of this course to 54 students in San Juan. Traditionally, the Medical Sciences Campus at the UPR has been a teaching and service-providing institution. Efforts are being redirected to further develop clinical research at the UPR, and the broadcast of this course allowed investigators to focus on clinical research training. This collaboration is planned to continue with expanded enrollment as determined by UPR faculty.
  
  
• Expanded broadcasts are planned to a number of remote sites for the 2000-2001 program, including a site in Buenos Aires, Argentina.

Through a 2000 initiative among the National Hispanic Medical Association and several OD offices including: Office of Equal Opportunity, Office of Education, Office of Communications Ð Hispanic Communications Initiative, Office of Extramural Research and Office of Loan Repayment and Scholarship, NIH has successfully recruited trainees in the areas of critical care medicine and urologic oncology. Our goal is to continue this program to identify outstanding residents for subspecialty training programs. By having more underserved minorities involved in training programs at NIH, mentors and leaders will emerge who will in turn be involved in research initiatives to close the gap in health disparities in racial and ethnic groups.

Actions:

• Interested medical students, including those from underserved minority populations, attending the American Medical Student Association (AMSA) annual meeting in Washington, D.C. have been invited to tour the NIH facility and meet ACGME program directors. This initiative in 2000 will provide the opportunity for 50-100 medical students to visit the NIH Clinical Center. This early recruitment effort for NIH training is an important initiative as it introduces medical students to the many opportunities available at NIH while they are still in their formative educational years.
  
  
• The NIH representatives of the Graduate Medical Education training programs attend annual meetings of the Association of American Medical Colleges (AAMC), Society for the Advancement of Chicanos and Native Americans in Science (SACNAS), National Hispanic Medical Association (NHMA), MNRS, SNMA, and AMSA, many of which target underrepresented populations.

Note: members of the public are invited to review this plan and provide their comments on it to: Maureen E. Gormley (maureen_gormley@nih.gov), Chief Operating Officer, NIH Clinical Center. For more information about the Clinical Center, contact CC Communications (OCCC@nih.gov) or call (301) 496-2563. National Institutes of Health, Warren Grant Magnuson Clinical Center, Bethesda, Maryland 20892. 4/2000 CC home | NIH home