THE CHALLENGE OF STRUCTURING A TRANS-NIH HEALTH DISPARITIES RESEARCH PROGRAM AND STRATEGIC PLAN

Biomedical research on health disparities spans almost every research discipline and area, as reflected by the participation of almost all NIH ICs in the Strategic Plan (the National Library of Medicine and the National Center for Research Resources are not involved). Beyond the research itself, another challenge is providing adequate attention to the infrastructure and the capacity for extramural health disparities research, including the enhancement of research facilities and development of scientists involved in health disparities research. Finally, communication of research findings and best practices to providers, the medical education system, patients, and communities represent important research-to-care translation components.

These biomedical research, research capacity, and communication factors should be addressed by the programs of the ICs involved in the Strategic Plan. Indeed, many of these factors were already addressed within the programs of the ICs. But the Strategic Plan should have generated a coordinated organization with more creativity, collaboration, effectiveness, and productivity across the entire minority health and health disparities program.

NIH’s organization and function is a major factor in the success of the Strategic Plan and the minority health and health disparities research program. Increases in the number of ICs and their organizational relationships to NIH as an entity have increased this complexity in recent decades (Committee on the Organizational Structure of the National Institutes of Health, 2003). Emerging fields of biomedical information, technology, and research have been accompanied by a parallel multiplication of medical specialties and academic departments, and increases in the number of NIH ICs. From 1986 through 2000, 8 new Institutes and 4 new Centers were established, many as a result of congressional action. NIH currently includes 19 Institutes, 7 Centers, and the National Library of Medicine.

The NIH Institutes (Figure 6-1) have been described (McGeary and Smith, 2002) as organized in relation to five categories: diseases (cancer, mental health, diabetes, digestive and kidney disease, drug and alcohol abuse); organ systems (heart, lung, and blood; the eye); stage of life (child and human development, aging); scientific field (general medical sciences, environmental health services, the human genome); and profession or technology (nursing, dental, imaging, bioengineering). Some Centers have missions that are supported throughout the NIH, while others conduct and support intramural and extramural research. Within the Office of the Director, four Offices have specific coordinating and support functions: the Office of AIDS Research (OAR), the Office of Research on Women’s Health (ORWH), the Office of Behavioral and Social Sciences Research, and the Office of Disease Prevention.

FIGURE 6-1

Current organization of the National Institutes of Health Institutes and Centers. SOURCE: Committee on the Organizational Structure of the National Institutes of Health, 2003.

NIH’s success and immense contribution to progress in biomedical science and health care can partly be attributed to: (a) its adaptation to the need for specialized centers of research capable of focusing highly specialized expertise and (b) the articulation of the ICs with similar concentrations of science and scientists in medicine and academia. At the same time, some have been concerned about whether the growth of ICs has been entirely necessary and how much this proliferation may contribute to increased difficulty in managing NIH as a cohesive agency. This is particularly germane when NIH addresses an extensive, cross-cutting research endeavor that requires coordination among several ICs, as well as collaborations with other government agencies.

Although the number of ICs has been the subject of continued analysis—and even recommendations that there be some consolidation (Committee on the Organizational Structure of the National Institutes of Health, National Research Council, 2003)—there has been even more concern about the organization of the ICs across NIH and their functional relationships with NIH as an entity. Those relation-ships have been described as a loose confederacy of somewhat independent entities with decentralized control. The ICs have considerable independence and autonomy with respect to research programs and a lesser degree of independence regarding budgeting.

COORDINATION OF THE STRATEGIC PLAN AND MINORITY HEALTH AND HEALTH DISPARITIES RESEARCH

It could be said that there is no trans-NIH research effort more challenging than the health disparities research program and its Strategic Plan. Although most similar, the AIDS research program differs in scope because it is developed around a single disease, complicated and challenging as it is. By contrast, the minority health and health disparities research includes a broader scope of diseases and conditions.

Coordination of the minority health and health disparities program and the Strategic Plan across NIH should address needs for:

• Concerted involvement of ICs and Offices in the development of the Strategic Plan, including continuous review and annual updates, which are a collective result of experiences, assessments, new inclusions, and other changes.
• Ensuring that all ICs and pertinent offices are attentive to the mission, goals, and objectives of the Strategic Plan.
• Avoiding gaps, such as populations, conditions, needs, and approaches, that would otherwise not be identified and addressed by the independent operation of the ICs.
• Bringing the best expertise from across NIH and from the external scientific community as a resource for the program and for strategic planning.
• Avoiding duplication of administrative and research efforts.
• Facilitating collaborative and coordinated approaches to minority and health disparity research areas that affect and involve more that one institute or center.
• Coordinating approaches to those aspects of outreach and communication that, rather than being addressed individually by the ICs, would benefit from collectively planned and coordinated trans-NIH efforts, including evaluations of project results and identification and further trials of promising methods.
• Creating an NIH coordination structure and mechanism that will articulate with other government agencies (e.g., the Centers for Disease Control and Prevention, the Agency for Healthcare Research and Quality, the Department of Health and Human Services) on minority health and health disparities, particularly with respect to the relation between research on disparities in health status and disparities in access to health care and its quality.
• Monitoring such a broad NIH activity. This includes avoiding duplication of efforts and use of resources, ensuring that funds committed in Strategic Plans are expended as described, and regularly assessing progress and outcomes.
• Addressing research and budget priorities.

Particularly important is recognizing, and attending to, the interface between fundamental priorities. IC programs and budgets are the products of commitments, mandates, and priorities resulting from presentations and requests to, and authorizations from, Congress. If there is truly a concerted trans-NIH priority for minority health and health disparities research, that prioritization should be demonstrably active in the program priority decisions of the ICs.

The Committee saw little evidence of integration, coordination, or monitoring of health disparities research and the Strategic Plan across NIH. Several observations, as detailed below, led to this conclusion.

Review and revision of the Strategic Plan does not involve the coordinated, concerted, and collective participation of the ICs. There is no ongoing, continuous update process with an established trans-NIH structure involving ICs and others that produces planning improvements and results in periodic, meaningful updates and revisions of the Strategic Plan. There is no evidence of trans-NIH planning of priorities regarding minority health and health disparities research activities and resources for the NIH as a whole or with respect to the ICs. In discussions with the Committee, directors and other leading members of several large ICs with extensive minority health and health disparities programs expressed a very high level of commitment to and enthusiasm for these activities. However, it was evident that there had been little to no contact with the National Center for Minority Health and Health Disparities (NCMHD) during the development or implementation of the projects and programs. Activities and programs were pursued independently of NCMHD, except that some, particularly in the past, had been co-funded or totally funded by NCMHD.

There is no manifest organizational structure for the trans-NIH Strategic Plan and health disparities program. Advisory and coordinating committees are not described or apparent. Experts from scientific, health care, and affected communities are not involved in advising and participating in ongoing planning in established, structured, predictable ways. Thus, there is a great loss of opportunity to properly inform and contribute to the identification of research and related needs, planning, and strategizing.

No results summarizing the monitoring and assessment of minority health and health disparities research and related activities for NIH or the ICs are evident. Annual reports are late, languish incomplete and unapproved, and do not contain evidence of central NIH assessments of research and program activities. Moreover, budget and finance issues are not addressed by a centralized entity responsible for the minority health and health disparities research program and the Strategic Plan.

Recognizing this need for leadership and management, the Committee found it difficult to be certain of an established, clear responsibility and authority for coordinating and monitoring the Strategic Plan and health disparities research. The enabling legislation, P.L. 106-525, expects NCMHD to have and to be involved with such responsibilities, as indicated in Section 485E(e):

The director of the Center shall act as the primary Federal official with responsibility for coordinating all minority health disparities research and other health disparities research conducted or supported by the National Institutes of Health.

Also, Section 485E(f) indicates that “the Director of NIH, the Director of the Center, and the directors of the other agencies of the National Institutes of Health in collaboration (and in consultation with the advisory council for the Center)” together are responsible for establishing the Strategic Plan and budget and reviewing its progress. These responsibilities include ensuring that the Strategic Plan and budget establish priorities, verifying that the amounts appropriated are expended in accord with the Strategic Plan and budget, and reviewing and revising the Strategic Plan and budget annually.

These monitoring responsibilities are described in the legislation as the joint responsibilities of the director of NIH, the director of NCMHD, and the directors of the ICs. To avoid misunderstanding of the authority to manage and monitor the program across NIH, it is important to clarify how such an arrangement of responsibilities is achieved in practice. That is, it must be made clear whether specific authority is delegated to the director of NCMHD by the director of NIH and understood to exist by the directors of the ICs—or, alternatively, whether there are truly joint responsibilities and operational authorities (a situation that would be confusing). When the Committee requested clarification, it was told by the NIH director that the responsibilities and authority were shared between the director of NIH and the director of NCMHD. Moreover, reviews and discussions with leaders and representatives of the ICs and Offices within the Office of the Director suggested that the responsibilities and authorities were not uniformly clear. This situation differs from other trans-NIH initiatives.

The Executive Summaries of the 2002 Strategic Plan and the 2004 draft indicate the following: “Within the NIH, the National Center on Minority Health and Health Disparities (NCMHD) serves as the focal point for planning and coordinating minority health and other health disparities research.” Also, in the approved Strategic Plan for 2002–2006 and the draft of the 2004–2008 Strategic Plan, NCMHD’s responsibility for establishing and updating the Strategic Plan and budget and coordinating health disparities research is set forth. This is appropriate and in accord with the legislation. However, whether NCMHD’s authority is understood and acted upon throughout NIH is unclear.

Finding: The level of trans-NIH coordination needed to effectively implement the Strategic Plan has not been evident. Instead, the Committee concluded that an uncoordinated, unmonitored, loosely administered trans-NIH program existed, with substantial commitments and activities of largely independent ICs, but without the coordinated, concerted program needed. Clarity regarding the responsibilities and authority may be a factor in achieving more effective management. The mandates of the NIH director are key elements in structuring and assuring effective management.

Recommendation 10: The NIH director, through the established authority of the NCMHD director, should ensure continuous, effective coordination of the health disparities research program across NIH, including:

• Timely development of Strategic Plan revisions;
• Effective, ongoing participation of the ICs in the Strategic Plan and the health disparities research program;
• Establishment of appropriate committees involving the directors of the ICs and others to facilitate collaboration and coordinated approaches to health disparities research and the setting of priorities;
• Fostering of conferences and the use of committees and panels involving the NIH, extramural scientific communities, and others to inform and advise on initiatives and directions; and
• Monitoring of the execution of the Strategic Plan to ensure that its elements are implemented.

Footnotes

1

See the following websites for information on trans-NIH research programs at the NIH: http://www​.obesityresearch​.nih.gov/about/about.htm, http://nihroadmap​.nih.gov/index.asp, http://www4​.od.nih.gov/orwh/, http://www​.nih.gov/od/oar/index.htm, http://www​.niddk.nih​.gov/fund/diabetesspecialfunds/funding​.htm, and http:​//neuroscienceblueprint.nih.gov/.