Biennial Report of the Director

Overview of NIH Research Portfolio
Information at the Service of Health

NIH has a long history of translating scientific findings into useful information for the public, physicians, nurses, caregivers, and others. NIH partnerships and communication strategies are designed to accomplish this economically and effectively. Health information developed by the NIH is based on peer-reviewed, cutting-edge science and is designed to meitsc\whiet the needs of the community as well as to be easily accessed and understood. One primary goal of NIH communications efforts is to maintain relevance and credibility with target audiences amid rapidly changing expectations and media formats. Products are also designed to reach audiences who are more affected by a specific risk, disease, or disorder. Through their campaigns and clearinghouses, NIH communications offices continue to respond to changes in health and science communications, such as how audiences obtain health and science information. The ultimate goal is to broaden participation in research and improve health outcomes, especially in medically underserved communities.

The translation and transfer of research knowledge and clinical trial findings to hospitals, doctors’ offices, and community settings are of the utmost importance. NIH nurtures strategies that bring basic research discoveries and clinical research into practice. For instance, in 2011 NHLBI released the Integrated Guidelines for Cardiovascular Health and Risk reduction in Children and Adolescents, which contains evidence-based recommendations on the prevention and management of risk factors for cardiovascular disease, and is directed toward all primary pediatric care providers—pediatricians, family practitioners, nurses and nurse practitioners, physician assistants, and registered dietitians. In another example, the NIH MedlinePlus magazine and its bilingual Spanish counterpart NIH Medline Plus Salud are quarterly consumer magazines focused on bringing the latest clinical findings to patients and their families. The magazines are complementary to the MedlinePlus and MedlinePlus en español Web sites, and they are distributed to the public via doctors’ offices nationwide.

The Challenge of Patient Recruitment for Clinical Trials

The public relies on physicians for information and guidance. Physicians also play a pivotal role in informing, recruiting, and enrolling participants in clinical research trials. Although volunteers in clinical research are more important than ever before, most Americans have never participated in clinical research. There are several contributing factors behind this, including:

Trans-NIH Spotlight: Clinical Research Awareness

To address these issues, NIH IC communicators, under the direction of the NIH Office of Communications and Public Liaison (OCPL), are working to raise awareness among the general public and the medical community of 1) the importance of NIH-supported clinical research to public health; 2) the pressing need for clinical trial participants; and 3) the benefits of clinical trial participation for public health.

NIH Clinical Research Trials and You. NIH recently launched the cornerstone of a new crosscutting program, a Web-based educational site called NIH Clinical Research Trials and You, developed to help people learn more about clinical trials, why they matter, and how to participate. In launching the Web site (https://clinicalresearch.nih.gov/), NIH Director Francis S. Collins, M.D., Ph.D., said, “The ability to recruit the necessary number of volunteers is vital to carrying out clinical research that leads to health and medical advances. This new, centralized resource will make it much easier for the public and health professionals to learn about clinical trials and how people can participate in them.” Most importantly, resources developed from the NIH Clinical Research Trials and You campaign are designed to be useful to physicians both at NIH and at NIH-supported sites.

The NIH Clinical Research Trials and You resource features information about participating in clinical trials, as well as first hand experiences from actual clinical trial volunteers and explanations from researchers. There are also links on the Web site for locating or enrolling in programs. Health care professionals can 1) read about evidence-based strategies for talking with patients about trials, 2) print audience-tested posters to help promote trials in clinics and offices, and 3) find other clinical trial educational materials.

Clearly there is value to federal collaborations and partnerships with communities and stakeholders involved in and/or affected by NIH research. The NIH Clinical Research Trials and You site therefore seeks to promote development of appropriate partnerships with NIH grantees and other stakeholders to assist with a comprehensive awareness-building initiative. To ensure that physicians are aware of their key role in clinical trial recruitment, NIH communications offices are working to increase coordination with their external partners and between each other, taking advantage of social media tools to raise physician awareness about clinical research.

NIH is working with schools to incorporate discoveries from clinical research into science education programs. NIH also offers story-based features about clinical research to the media. The 2011 launch of NIH Clinical Research Trials and You received coverage by media outlets from Connecticut to California. NIH is developing podcasts and other audiovisual resources, making them free and easily reproducible in media outlets. The agency is also taking this resource to the community, by sharing and promoting the Web site and clinical research at events, such as parenting fairs and employee events and in announcements to state public health departments, requesting that state officials share the resources with their own stakeholders. Recently, NIH, through OCPL and the NIH Office of Science Policy, entered into an arrangement with the American Medical Association (AMA) to promote the NIH Clinical Research Trials and You initiative to the organization’s 17,000 member physicians.

Highlighted Institute and Center Communication Programs

Millions of Americans search daily online for answers to health related questions, and they look to NIH for authoritative, reliable, research-based health information. NIH communicators at the agency’s 27 Institutes and Centers continue to build on their proven track record of award-winning public education and awareness campaigns directed at a variety of audiences. Trans-agency efforts originating from NIH campaigns and clearinghouses are also designed to increase visibility of NIH as a leader in the support and conduct of clinical research in an era of personalized medicine.

A listing of featured health awareness, prevention, and treatment campaigns sponsored by the NIH is online at https://www.nih.gov/icd/od/ocpl/resources/campaigns/. Many campaigns target specific audiences for prevention and treatment efforts. Others are focused on a specific behavioral health outcome such as early diagnosis; decreased morbidity and mortality; family history, genetics, and genomics; infectious disease control and the need for vaccines; delivery of quality health care to people with special needs; diet and nutrition; and improved and refined health care practices. Several ICs, through campaigns, sponsor clearinghouses for easy access to research-based materials. A sampling of NIH campaigns and clearinghouses follows.

Alcohol and other drugs. NIAAA sponsors a number of efforts designed to address drinking, including an underage-drinking research initiative, an information campaign focused on college drinking, and the Institute’s Rethinking Drinking initiative, which features evidence-based information about risky drinking patterns in U.S. adults, as well as support for cutting back or quitting. NIAAA also disseminates evidence-based guidelines to health practitioners for screening and intervening with youth and adults. NIDA sponsors several cutting-edge awareness efforts for different audiences, directed at the costly nationwide drug problem. One core audience for several of NIDA’s campaigns is teens. For example, NIDA recently launched an interactive Web-based initiative called PEERx to educate teens and help them spread the word about the dangers of prescription drug abuse. In 2010, NIDA launched National Drug Facts Week, a health observance week targeting teens with scientific information to shatter common myths about drugs. In November 2011, about 165 events were held in 47 states, and more than 166,000 teens received NIDA’s teen booklet titled “Drugs: Shatter the Myths”. NIDA also continues to promote tools and educational resources for healthcare professionals through its NIDAMED initiative, designed to help clinicians identify patients with substance abuse problems, prevent their escalation to addiction, and refer patients to treatment as necessary.

Aging. A national campaign, Go4Life, was developed by the NIA to encourage adults age 50 and older to make exercise and physical activity a regular part of their everyday lives. The interactive Go4Life Web site features specific exercises, success stories, motivational tips, and nutrition information. Free materials include print publications, an exercise DVD, and online tip sheets. 38 In addition, NIHSeniorHealth.gov Web site was recently redesigned and updated to accommodate older Americans’ increased understanding and use of the Internet. Developed by the NIA and the NLM, NIHSeniorHealth.gov makes aging-related health information easily accessible for family members and friends seeking reliable, easy to understand online health information. The site’s design and content were guided by NIA's research on the types of cognitive changes that are a part of the normal aging process.

Cancer. NCI sponsors a number of educational and awareness efforts designed to address cancer prevention through adoption of a healthy lifestyle and diet. Through its campaigns and clearinghouses, NCI also offers cancer clinical trial resources, training programs focused on palliative and end-of-life care, and other activities and tools. In 2009, NCI expanded its Smokefree campaign to include a dedicated section and companion Facebook page, specifically targeting women. Included in the program are resources and information to help women integrate smoking cessation into daily life and family matters. NCI also contributed Surviving Cancer—a section devoted to providing resources and information to older adult cancer survivors and their families to the NIHSeniorHealth.gov website.

Children’s health. NICHD sponsors a number of programmatic efforts to address children’s health. For parents, family members, health care workers, and caregivers, the NICHD Back to Sleep campaign offers information kits, professional education materials, and other resources aimed at reducing the risk for sudden infant death syndrome. Milk Matters is an NICHD public health education campaign designed to promote calcium for healthy bone growth in tweens and teens.

We Can! is a national education program designed to provide parents, caregivers, and youth with reliable, authoritative information designed to help children ages 8–13 maintain a healthy weight. More than 40 national organizations have partnered with We Can! to help spread the program’s science-based materials and messages through community outreach, a museum exhibit, in-person training programs, information dissemination, and a new interactive curriculum. Three key behavioral goals form the foundation of We Can! program messages—improving food choices, increasing physical activity, and reducing screen time. We Can! has grown from 14 founding sites to more than 1,600 communities in all 50 states, Puerto Rico, and 13 countries around the world.

Chronic obstructive pulmonary disease (COPD). COPD is the third leading cause of death in the U.S. and is estimated to affect 24 million across the nation, with as many as half undiagnosed. To address this serious lung disease, the NIH developed the COPD Learn More Breathe Better® campaign. The program is designed to help at-risk men and women over age 45 recognize the signs and symptoms of COPD and motivate them to talk with their health care providers about testing and treatment options. The campaign also gives health care providers information about incidence, early detection, and treatments. Through a network of 74 national and local partners conducting COPD outreach in 47 states, the program sponsors community-level outreach and events, media outreach efforts, social-media strategies, and continuing development of partnerships.

Diabetes. In collaboration with over 200 public and private partners, the NIDDK and CDC co-led National Diabetes Education Program (NDEP)39 disseminates evidence-based educational materials on diabetes. For example, the NDEP encourages people to take “small steps” to prevent type 2 diabetes. The NDEP also promotes the importance of comprehensive diabetes control in its “Control Your Diabetes. For Life” educational campaign. Campaign materials are tailored for minority groups at high risk of developing type 2 diabetes. The NIDDK’s National Diabetes Information Clearinghouse also provide key health information for patients, healthcare professionals, and the general public.

Environmental health. The NIEHS-led Partnerships for Environmental Public Health (PEPH) program40 focuses on conducting and translating research into action to address the effects of environmental exposures and health risks of concern to the public and particularly affected communities. PEPH is a network that brings together scientists, community members, educators, health care providers, public health officials, and policy makers in the shared goal of advancing the impact of environmental public health research at local, regional, and national levels.

Eye health and vision. The National Eye Health Education Program (NEHEP), a campaign of NEI, is a public and professional education campaign focused on early detection and timely treatment of glaucoma and diabetic eye disease and appropriate treatment for low vision. The NEHEP contains a series of websites that include information on specific diseases and issues with resources available to patients and the public. The Healthy Vision Program provides the public with information about eye health in order to promoted community outreach, and the Healthy Vision Community Awards Program provides seed money to promote these efforts. The Healthy Eyes Toolkit includes resources and materials to promote public education on vision and eye health and includes fact sheets, e-cards stickers, and web links to promote regular eye exams.

Hearing. In October 2008, NIDCD launched It's a Noisy Planet. Protect Their Hearing. The Noisy Planet campaign is designed to increase awareness among parents of children aged 8 to 12 (“tweens”) about the causes and prevention of noise-induced hearing loss, or NIHL. With this information, parents and other caring adults can encourage children to adopt healthy habits that will help them protect their hearing for life.

Health disparities. NIH has many outreach activities to address health disparities. For example, the NIAMS Health Partnership Program is a community-based, collaborative research program between NIAMS and Washington, D.C. area community organizations. Through research with underrepresented patients affected by arthritis and other rheumatic diseases, the program studies health disparities and their causes, and provides direction for improving the health status and outcomes of affected minority communities. Its Community Health Center, located in Silver Spring, Maryland, gives the community access to specialized care and health information, and provides NIH researchers with access to patients most affected by rheumatic diseases.

The NIAMS National Multicultural Outreach Initiative, an outgrowth of the NIAMS local Health Partnership Program, aims to help address disparities in the availability and access to research-based and culturally relevant health information among various multicultural groups. Through culturally targeted health planners, people from multicultural backgrounds who have diseases and conditions of the bones, joints, muscles, and skin can learn about available resources from NIAMS, NIH, and other federal agencies that can help people cope with their chronic disease or condition to improve their quality of life.

Heart health. In 2011, NHLBI released the Integrated Guidelines for Cardiovascular Health and Risk reduction in Children and Adolescents, which contains evidence-based recommendations on the prevention and management of risk factors for cardiovascular disease, and is directed towards all primary pediatric care providers–pediatricians, family practitioners, nurses and nurse practitioners, physician assistants, and registered dietitians.

Kidney disease. The NIDDK’s National Kidney Disease Education Program (NKDEP41 ) is designed to raise awareness about the problem of kidney disease and steps that should be taken to treat chronic kidney disease and prevent kidney failure. It represents a major educational outreach effort to patients, physicians, and the public. In October 2010, NKDEP hosted a meeting titled “Translating Chronic Kidney Disease Research into Improved Clinical Outcomes.” Several planning grants were funded as a result of this meeting.

Oral health and oral cancer. African American men are one of the groups at highest risk for oral cancer, but many don't know it. Are You at Risk for Oral Cancer? What African American Men Need to Know, a campaign from NIDCR and NCI, is designed to promote early detection of oral cancer among African American men. Campaign materials include a video, radio PSAs, a brochure, a card describing the oral cancer exam, posters, and a fact sheet. Promotion has involved, for example, distributing campaign kits to African American community cancer programs, sending the PSAs to African American radio stations around the country, and outreach to the press.

Stroke. NINDS continues to develop and manage the Institute’s groundbreaking public education campaign: Know Stroke: Know the Signs. Act in Time. The campaign was designed to help increase knowledge and awareness about the early warning signs and symptoms of stroke and to drive behavior change, especially in at-risk communities. It includes outreach to consumers and health care professionals using mass media, social media, grassroots partnerships and community education. Since 2004, the Know Stroke campaign has focused on the grassroots Know Stroke in the Community initiative. The foundation for this initiative is community engagement in “train the trainer” programs in major urban areas across the U.S. using NINDS materials to educate local high risk audiences including African Americans, Hispanics, and people over the age of 50 and their family members, caregivers and health care providers. NINDS has also partnered with the General Federation of Women’s Clubs creating a nationwide network of volunteers; and with the National Council of La Raza in the development and promotion of culturally appropriate materials for Spanish audiences including a video, flipchart and toolkit. Going forward, NINDS has initiated a partnership with the AHA to coordinate a national distribution of the NINDS-developed Hispanic education toolkits through health educators and community outreach workers in local communities across the country.

NIH communication strategies and efforts translate scientific findings to be easily accessed and understood for broad audiences. NIH also maintains relevance and credibility with the public by using multiple media formats and design information to reach audiences who are more affected by a specific disease or risk. Throughout changes in health and science communications, NIH communication offices utilize campaigns and clearinghouses to continue to broaden participation in research and improve health outcomes, especially in medically underserved communities.

38 For more information, see https://go4life.niapublications.org/ Exit Disclaimer.
39 For more information, see https://ndep.nih.gov/.
40 For more information, see https://www.niehs.nih.gov/research/supported/programs/peph/index.cfm.
41 For more information, see https://nkdep.nih.gov/.