The Importance of a Strategic Plan to Eliminate Health Disparities 2008 eHealth Conference June 9, 2008 Yvonne T. Maddox, PhD Deputy Director Eunice Kennedy Shriver NATIONAL INSTITUTE OF CHILD HEALTH & HUMAN DEVELOPMENT

Historical Perspective Department of Health and Human Services (DHHS) Response to the President’s Race Initiative “Eliminating Racial and Ethnic Disparities in Health in six areas by the year 2010 (Infant Mortality, Cancer Screening and Management, Cardiovascular Disease, Diabetes, HIV/AIDS, and Immunizations”

Strategies to Eliminate Health Disparities Increase access to care for low income and minority populations Improve quality and outcomes in the health care system Develop preventive approaches at the community level Build a knowledge base to understand the connection between SES, race, prevention, and health

National Institutes of Health Conducts and supports research that leads to important medical discoveries that will lead to better health for everyone. NIH works toward that mission by: conducting research in its own laboratories; supporting research and research training at institutions outside NIH. As the nation’s foremost research agency, the NIH has a lead role in addressing the research agenda to address disparities in health among the US population.

NIH Response to the DHHS Secretary’s Initiative September 1999 – NIH Director establishes Trans-NIH Working Group on Health Disparities. December 1999 – NIH Director directs that each IC and OD Office participate in the establishment of a Strategic Plan for Health Disparities Research. January 2000 – Acting Director NIH re- establishes Working Group: Membership includes ALL IC Directors and OD Associate Directors. Co-chairs are the Acting NIH Deputy Director and the Director of NIAID.

NIH Plan of Action (Goals) Develop a Five-Year Strategic Research Agenda Recruit and Train Minority Investigators Advance Community Outreach Activities Form Partnerships Define, Code, Track, Analyze, and Evaluate Progress Enhance Public Awareness

“NIH Plan to Reduce and Ultimately Eliminate Health Disparities “ Period of Public Comment January Final Plan Released Plan Coordinated and Facilitated by the National Center for Minority Health and Health Disparities (NCMHD)

Update—Results of the Plan Each Institute and Center Established A Strategic Plan to Reduce and Ultimately Eliminate Health Disparities Trans-NIH Initiatives Creation of New Organizations to Focus on Health Disparities Evaluation Criteria Increased Visibility of the Significance of Health Disparities Enhanced Role for the Public

Health Disparities--Information Dissemination and Public Trust Responsibility the public places on government to care for their interests is critical 

Who is “the public”? –The General Public/Community –The Research Participants –The Research Advocacy Community –The Extramural Scientific Community –The Intramural Scientific Community

NIH Partners in Research Program Collaborative research grant applications (R03) from community organizations and the academic community 

New Paradigm for the Future of Medical Research The NIH Partners In Research initiative is designed to address the practical questions surrounding the development of true partnerships between the research community and the public. It extends the challenge to all types of research supported by the NIH, including the clinical, basic biological, and behavioral research that informs clinical questions, clinical research, and, ultimately, clinical practice.

Collaboration to Improve the health of the public This program is intended to engage the energy of a diverse group of scientists, community leaders, and patients to: –identify and implement new ways to increase science literacy; –communicate the research needs and interests of communities; –encourage support for research by partnering with community organizations.

Overall Goals of the Research Projects to study ways to improve the public’s understanding of the benefits of research; to increase scientists’ understanding of and outreach to the public in their research efforts; to identify the conditions (e.g., settings and approaches) that will enhance the effectiveness of such activities.

Highlighted Research Areas Enhance the community’s understanding of research Identify strategies to improve the understanding of the research process such as informed consent Design strategies to involve communities in research and researchers in the community Identify effective techniques for disseminating study findings and implementing research in the community Increase the public’s trust and confidence in participating in clinical trials

NICHD Academic Community Partnership Conference Grants

Building an Academic Community Partnership in Research Joint submission by community representative and the researcher for a 3 year conference grant (U13). Scientists have an opportunity to learn about and understand community characteristics and needs and the community informs research efforts from the ground up.

Research Focus Areas –Infant mortality; –HIV/AIDS –Abuse/trauma –obesity; –Health literacy; –fibroid tumors; –techniques for outreach and information dissemination

Selected Current Opportunities for Community Engagement in NIH Research PAR NICHD Academic Community Partnership Series PA Community Participation in Research PAR Community Participation Research Targeting the Medically Underserved

Yvonne T. Maddox, Ph.D. Deputy Director Eunice Kennedy Shriver National Institute of Child Health & Human Development National Institutes of Health