The US leads the world in biomedical research. The country’s premier research agencies are the NIH, which focuses on biological research, and the National Science Foundation, which focuses on breakthroughs in basic sciences. A continued national commitment to investing in these areas is essential if the US is to remain at the forefront of medical breakthroughs.
To accomplish our nation’s research agenda, clinical trials sometimes require the participation of human subjects who require specific protections.
In addition to research involving human subjects, other promising fields of study involve stem-cell research and genetic research. Like research using human subjects, they raise ethical considerations and are often the subject of controversy.
NIH’s research agenda is broad, focusing on the prevention and treatment of common diseases such as cancer, while also studying the effectiveness of complementary and alternative medicine (CAM) such as acupuncture and herbal remedies.
The Patient Protection and Affordable Care Act and medical research on pain management—chronic pain costs the nation up to $635 billion each year in medical treatment and lost productivity. The ACA includes two provisions designed to advance the science related to pain management by:
- expanding the NIH’s program of basic and clinical research on the causes of and potential treatments for pain, and
- requiring the IOM to convene a conference on pain.
The IOM convened a series of meetings and, in June 2011, released its report Relieving Pain in America: A Blueprint for Transforming Prevention, Treatment, and Research.
Patient-Centered Outcomes Research Institute—the ACA requires HHS to establish a Patient-Centered Outcomes Research Institute. The institute is required to conduct, support, and synthesize research related to the effectiveness and appropriateness of health services and procedures. The research is supported, in part, by a newly created Patient-Centered Outcomes Research Trust Fund, which is funded by fees imposed on health plan insurers and employers who self-insure.
Reducing disparities—it is widely recognized that disparities in service delivery occur by race, ethnicity, age, sex, and sexual orientation. Experts agree that it is essential that service delivery systems, regardless of model, consider the specific needs of the populations being served. In particular, it is important that systems and providers have the ability to identify and measure disparities so that gaps in care can be identified and addressed. Therefore, collecting and reporting performance information that is stratified to determine the existence of disparities is essential. In addition, service delivery must be culturally competent. It must honor individuals’ preferences, values, and circumstances. Effective approaches include the use of community health workers, translation/interpreter services, and practices to ensure a culturally competent workforce. In addition, culturally competent health promotion and education can help racial and ethnic groups that have experienced discrimination understand the value of emerging service delivery models.
Eliminating racial and ethnic health disparities is one of the nation’s top priorities—so much so that the ACA requires all federally conducted or federally supported health programs, activities, or surveys to collect data on, among other things, race, ethnicity, and primary language. HHS is tasked with devising methods for reporting such data. These data will help the US develop a targeted research agenda designed to reduce health disparities.
Medical Research: Policy
Policymakers should provide:
- greater investment in research on the aging process, particularly on diseases associated with aging, such as dementia (including Alzheimer’s disease) and Parkinson’s disease—AARP also endorses continuing research on diseases (e.g., HIV/AIDS) and chronic conditions that affect both younger and older Americans. Further, AARP supports continued research on CAM;
- adequate funding for the nation’s leading health-research agencies to carry out a comprehensive health-research agenda designed to promote health and wellness in every setting and across settings;
- NIH funding for specific diseases, allocated fairly and equitably; and
- adequate support for basic science, stem-cell research, and genetic research, in order to advance knowledge about preventing and treating serious diseases and conditions that affect people of all ages, as well as to ensure that the US remains at the forefront of biomedical research and development.
Allocation of funds
Policymakers should ensure equitable allocation of funding for research addressing the health concerns of women and racial and ethnic groups that have experienced discrimination as well as for research on racial and ethnic disparities in health care, especially with respect to health conditions for which populations have disproportionately negative outcomes.
Policymakers should expand and adequately fund opportunities to test the efficacy of health-promotion efforts and disease-prevention efforts across all care settings.
Best-practices guidelines should be disseminated among states and localities.
Complementary and alternative medicine (CAM)
Policymakers should support further study of the safety and efficacy of particular CAM treatments.
Pain and behavioral modification research
The federal government should ensure that its research on pain management takes into consideration cultural differences in attitudes toward pain management, as well as racial and ethnic disparities in the use of pharmacological agents to control pain.
The federal government should fund research that examines all modalities of pain reduction, as well as modalities of nonpharmacological behavioral modifications such as those used to lessen anxiety and agitation related to dementia.
The federal government should ensure that all entities that are subject to the data collection requirement are in compliance.
The federal government should take steps to ensure that racial and ethnic groups that have experienced discrimination, women, and older adults are included in federally funded research where feasible.
The federal government should monitor and make public the extent to which publicly sponsored research contributes directly to the development of commercial products by private entities.
Policymakers should ensure that the national research agenda, especially projects involving human subjects, is carried out with the highest ethical and safety standards. Clinical trials should include diverse populations, including older subjects, where appropriate.
In developing standards for the collection of data on race, ethnicity, and primary language, the federal government should consider whether and how such methods as geocoding and surname analysis may be used as well as when their use is contraindicated.