When Ruth walked into the locker room at work, she realized
something was wrong. She couldn’t speak. She tried to pick up
her lock, but her right hand couldn’t grab it. Luckily, her friend knew
the signs of stroke (sudden numbness or weakness of the face, arm, or
leg–especially on one side of the body; sudden confusion; trouble
speaking or understanding speech; sudden trouble seeing in one or both
eyes; sudden trouble walking, dizziness, or loss of balance or coordination;
or sudden severe headache with no known cause) and called an ambulance. In
the emergency room the doctors ran some tests and administered a clot-busting
drug into her IV. Within 10 minutes she could speak again. Ruth didn’t know
a thing about stroke before she had one. Now, she makes sure that all the
members of her family know the signs of stroke and that getting help within
the first hour after a stroke, not waiting to see if it gets “better,” is
key to the best possible outcome–the outcome Ruth had.
After much investigation followed by clinical trials, scientists provided the
treatment that enabled the good outcome for Ruth. But public knowledge,
based on targeted and repeated dissemination of science-based information,
using multiple avenues, helps the public reach the treatment.
The Know Stroke. Know the Signs. Act in Time27
public education campaign helps build awareness of the symptoms of stroke and
the need to act quickly.
A listing of select NIH Education and Awareness Campaigns is online at: http://www.nih.gov/icd/od/ocpl/resources/campaigns/.
Introduction
Reaching the public in an efficient way with science-based, trustworthy information
is an important part of NIH’s mission. As the focal point of the national
biomedical and behavioral research enterprise, NIH has a responsibility to
communicate useful public health and science information to a wide range of
audiences, including the public, patients, family members, health care
providers, scientists, public health workers, voluntary health organizations,
policy leaders, and industry. Strategic health communications and information campaigns
and clearinghouses are the primary means NIH uses to fulfill this mission.
Health communication is a complex task. More than simply conveying information,
it involves using carefully developed and tailored strategies and an armamentarium
of appropriate tactics to inform individual and community decisions that contribute
to enhanced health. Effective health communication requires:
- Needs assessment and preevaluation
- Environmental scans, that is, what is known and who are the interested parties
- Cultural competency
- Audience analysis
- Defining core messages
- Finding audiences where they are
- Making the materials useful for each audience
- Careful selection of the appropriate channels of communication
- Constant reevaluation of the effectiveness of communications programs
To support the agency’s health communications goals, NIH reaches out to the
public through a variety of programmatic efforts. Public information campaigns
are coordinated efforts to raise public awareness of critical health issues, and communications clearinghouses provide educational materials and resources on a variety of health-related topics. In addition to campaigns and clearinghouses,
NIH also offers a wide variety of information resources utilizing the
Internet, television, radio, print outlets, and other methods of communication.
NIH Web sites are increasingly powerful communication tools, evidenced by the
fact that they are accessed more than 1 billion times each year by health
professionals, scientists, and the public. The role of intermediaries who use
the Web, such as public health workers, demonstrates the additional powerful
reach of clear, useful, accurate information produced by NIH, but delivered at
the local level, tailored to the needs of the community or the individual.
Certain efforts may target specific audiences, such as populations that are
at greater risk for particular diseases. Sometimes the communication effort
is developed with the direct input of a community. Each communications approach
has a different purpose, includes different elements, has the potential for
reaching different audiences, and can be ongoing or time specific.
For example, an information campaign may be targeted to raise awareness or to
take urgent and specific action based on a scientific discovery. This type of
campaign must be carefully designed to reach affected audiences, which may
include such diverse populations as patients, physicians, caregivers,
industry, children, the aging, or, for example, women susceptible to heart
attack or African American males susceptible to stroke, usually within a finite
period of time. A campaign often consists of multiple communication products
delivered via a variety of outlets and has the desired goal of either provoking
a specific action or bringing about a behavioral change.
Clearinghouses are information development and dissemination services sponsored
by NIH ICs. Some services provided by clearinghouses include working with the
ICs to develop materials, evaluate programs, assist in responding to phone, mail,
fax, and e-mail inquiries, and distribute free publications in hard copy and
electronic formats.
Each year, NIH distributes nearly 30 million science-based, health
information publications to requestors who rely on NIH and its news stories,
press releases, and publications for authoritative information about the latest
research developments while making more and more information available via the
Web. Recent research has shown that a majority of Americans who request NIH
information not only use it, but also share it with others. More than 40 percent
who use Web materials related to health take that information with them to
their physicians’ offices.
Each IC shares a similar challenge: identifying and selecting appropriate
communication outlets for key audiences. As a way to make knowledge more meaningful,
NIH strives to present information in teachable moments and in culturally
competent, accessible ways. These offices work directly with the intramural
and extramural scientists in their mission areas to ensure that the materials
they produce are based on the soundest science. The OD Office of Communications
and Public Liaison (OCPL) provides leadership and guidance and speaks for NIH
as a whole. The result of these efforts is a broad-based communication program
that uses the best of both traditional and new approaches to reach vast,
ever-emerging audiences.
Summary of NIH Activities
NIH ICs are congressionally mandated 28 to provide health information, based on
scientific discovery, to the public. This is a significant component of NIH efforts
to translate research to improve the health of the Nation. Health information
resources also reflect the change in science itself. For example, scientific
advances led to genetic testing, which makes it possible, in some cases, for
an individual to know the likelihood of developing certain diseases. This in
turn creates needs and opportunities for communication of preventive health
information. The ability to intervene before the first sign of disease occurs,
or to prevent disease through increased awareness, enables the public to be
increasingly involved in monitoring their health and participating in their own
care. Improving public knowledge about disease processes, opportunities for
disease prevention, and treatment options helps raise the health literacy of
the public in ways that improve the quality and length of life and reduce the
burden of disease.
Advances in biomedical and behavioral research have brought our Nation’s
health care enterprise to the brink of a new paradigm, summarized by the “4 Ps”
listed below.
- Predictive, the ability to determine an individual’s risk for developing a disease
- Personalized, the ability to analyze each individual’s health risks and individualize the treatment, dosage, or approach to disease
- Preemptive,, the possibility of preventing disease altogether
- Participatory, the importance of having the practitioner and patient work together as a team to develop a treatment plan.
While this new paradigm carries the possibility of keeping individuals healthier, it also means
that people must become more involved in managing their own health and in making informed
decisions. To meet this need, NIH is employing a wide variety of health communication approaches
and making more information available through the most current range of communication outlets
and strategies.
Technology now complements proven communication approaches, such as print materials. For some
groups communication strategies that make use of technology may be more advantageous
than traditional formats. With our changing population, it is important that materials
are produced with culturally appropriate content and formats and delivered by the most effective
and direct system available.
Delivering Health News to the Public
First and foremost, NIH is responsible for keeping the public informed about new developments
in NIH research that affect health. In addition, putting a human face on a scientific finding
not only helps the public understand research, but also helps them comprehend the practical
implications of a research finding for their own health and behavior, critical information for
public participation in improving health.
For individuals who may have questions about science and health research, NIH has developed
general materials that can be used for answering basic questions. For example, a variety of
vetted health information resources are available through NIH, including:
- A Web site with
A-Z health information
from all NIH Institutes and Centers
- “Research Results for the Public,”
a site that provides disease-by-disease descriptions of research progress and information
to promote improved understanding of clinical research
- “Get Involved at NIH,”
the gateway for public participation, input, and feedback
- “NIH & Clinical Research,”
a health information site that features podcasts, vodcasts, and radio programs in English
and Spanish on clinical research
- “NLM Director’s Comments,”
a prominently displayed link on the NLM Web site that features weekly podcasts by NLM’s Director.
These features are now available in Spanish in an effort to reach one of America’s rapidly
growing populations
Moreover, NIH continues to provide direct information to almost 900 radio stations each week.
The NIH Radio News Service, more than 20 years old, is available to news and health programs
nationwide and has been upgraded to improve access for those outlets. NIH programs also are
broadcast to listeners on XM Satellite Radio through a radio feature called “NIH Health
Matters.” Also, NIH publishes
News in Health,
which is accessible monthly to public health workers, community centers, aging centers,
voluntary health organizations, physicians, and hospitals.
The press, a major source of health information for the public, is an important transmission
resource for NIH in ensuring that sound, research-based information is disseminated to the
public. To help the press interpret medical information with greater ease and accuracy,
NIH staff members work every day to provide background for media sources and identify key
knowledgeable scientists to help reporters develop their stories. NIH also offers a free
annual training course, “Medicine in the Media,” now in its sixth year. The course offers
opportunities for journalists to refine their ability to evaluate and report on medical research.
In addition, the NIH Office of Communications and Public Liaison, which is responsible for
coordinating NIH communications efforts, has been building a network of public information
officers at grantee institutions as a way to enhance knowledge exchange and the quality of
information that reaches the public regionally.
However, the Web and related media are the new frontiers for delivery of NIH-based news to the public.
NIH has intensified the evaluation of its Web sites. A redesigned NIH Web site,
www.nih.gov,
debuted this year and reflects new technologies, including customized streaming news feeds such as
Really Simple Syndication (RSS) and podcasting and vodcasting, thereby bringing NIH research to the
next generation of health consumers who rely on portable electronic devices for news. Every IC has the
option of using this model in redesigning Institute sites. The NIH MedlinePlus Web site has extensive
health information from all NIH components. By the end of FY 2007, MedlinePlus contained trusted
information on more than 740 diseases and conditions, up from just 22 when it was launched in 1998.
To improve consumers’ understanding of medical concepts, MedlinePlus includes a medical encyclopedia
and a medical dictionary, and extensive information on prescription and nonprescription drugs.
It also provides links to directories of health care professionals and information about clinical trials
(http://clinicaltrials.gov/).
MedlinePlus was voted the top government news/information Web site in the American Customer Satisfaction
Index during the second quarter of 2007. A spinoff, in the form of a new quarterly magazine, NIH
MedlinePlus, brings the latest and most authoritative information on health conditions and diseases
from NIH directly to patients in physicians’ offices. NIH MedlinePlus magazine is distributed free
of charge to 40,000 physician offices and can be downloaded online as well.
The agency also seeks to take advantage of available opportunities to bring news and information
to the public on regional, local, and community levels. A new feature of the MedlinePlus Web
site provides more than one-third of Americans with a “Go Local” capability that puts them in
touch with health resources in their communities. Go Local has links to health care information
and resources in 22 States and regions; 11 of the Go Local sites were added in 2006 and 2007
and several more are in development.
Reaching Different Audiences
The “public” is not monolithic. It includes a number of audiences divided by gender, age, race/ethnicity,
susceptibility to specific diseases, and many other factors. There are patients, families, friends,
scientists, health professionals, public health workers, industry, health care providers, congressional
staff, and voluntary organizations, all requiring specialized information related to specific health
conditions or concerns, such as aging, diabetes, or cancer. NIH responds to the requirements of
specific audiences in a variety of ways.
Understanding different audiences and how to reach them is key to all public health communications
programs supported by NIH. NIH develops communications programs that take into account groups
that need specialized information, such as Latinas with an increased risk for diabetes, or
African American males who suffer disproportionately from prostate cancer. In other cases,
for example, providing parents with information about early identification programs in autism,
hearing loss,or delayed language development can help them to work with their physicians to
identify interventions that improve the lives of their children before a window of opportunity is
lost. There must be multiple approaches and repeated messages to reach multiple audiences: NIH
continues to produce science-based factsheets, checklist resources, public service announcements,
podcasts and vodcasts (video podcasts), as well as other information resources concerning timely
issues such as heart disease, depression, drug abuse, and eye health, each tailored for a specific
audience, such as African Americans, the aging population, or teens.
NHGRI and NIDA both have sponsored major online events to provide opportunities for students and teachers
in classrooms across the United States to ask real-time questions of the Nation’s top scientific experts
in the fields of genomics and drug abuse and addiction. The most recent event, NIDA’s Drug Facts Chat
Day, drew 36,000 questions. This is a format that NIH will continue to pursue.
In March 2007, the Office of Research on Women’s Health began podcasting “
Pinn Point on Women’s Health,”
hosted by its Director, Dr. Vivian W. Pinn. The monthly podcast discusses the latest news
in women’s health research.
NIH also recently launched the Clinical Research Awareness initiative. This effort originates in the
cultural shift taking place in medical care, a move away from physician referral to self-referral to
clinical trials. This shift has created a different need for the public interested in participating
in clinical research. As a result, there is a need for clear, easy-to-access information. NIH,
with the NIH Clinical Center, has designed a Web site that includes information about (1) the
nature of clinical trials, (2) what participation means, and (3) current trials and their
locations, all with the goal of increasing public awareness and participation
(http://clinicalresearch.nih.gov).
NLM supports www.clinicaltrials.gov is a website, a database of clinical trials past and current. This is
a congressionally mandated 29 database that is adding features to make it more user-friendly.
Because of the demand for information on cancer, NCI has developed a series of materials
specifically about cancer clinical trials. The
NCI Web site
offers a range of resources, including a guide for patients and their families; worksheets to
engage the community in outreach efforts related to cancer clinical trials; online courses for
health professionals; DVDs; and slide sets to assist in education programs (see https://cissecure.nci.nih.gov/ncipubs/). The goal of these
efforts is to help the public–patients, families, medical professionals, and the media–gain
access to information on clinical research and its benefits.
NCCAM is NIH’s source of evidence-based information about complementary and alternative healing
practices. Increasingly, people are investigating what alternative treatment options are available,
especially for hard-to-manage conditions such as chronic back pain. A 2006 survey completed by
AARP and NCCAM revealed that nearly two-thirds of adults older than age 50 are using complementary
and alternative medicine, but only one-third of them are sharing that information with their
physicians. Just as clinical trials are becoming an integral part of the public’s knowledge base,
so also is complementary and alternative medicine. To encourage an open dialogue, NCCAM launched
a new patient/provider education initiative, “Time to Talk,” which encourages open discussion
of all health care practices to ensure safe and coordinated care.
“Time to Talk” is only one example of how NCCAM is realizing its mission of exploring complementary
and alternative medicine in the context of rigorous science and then disseminating this information
to the public. NCCAM’s Web site received more than 2.6 million visitors in 2006 and has been cited by
Prevention magazine for “Best Alternative Medicine Information.” In addition NCCAM has been cited by the
World Health Organization as a model for evidence-based CAM.
The population is aging rapidly, and seniors are a special focus of NIH’s information
dissemination efforts. As the Internet becomes an increasingly important source of information
on health, seniors unfamiliar with using computers are being invited to use this new resource.
NIA and NLM have joined forces to develop and
maintain www.NIHSeniorHealth.gov,
a site with credible, aging-related health information targeted to the cognitive and visual
equirements of older adults. The site covers such topics as Alzheimer’s disease, cataracts,
colorectal cancer, and diabetes in a clear, easy-to-read format. Twelve NIH Institutes
collaborated with NLM to develop the 33 health topics included on the site.
Print materials specially targeted to the issues of interest to older adults remain a primary
way to provide information to seniors. The National Institute on Aging Information Center
(NIAIC) and the Alzheimer’s Disease Education and Referral (ADEAR) Center send millions of
publications to older adults each year. These cover the latest findings about Alzheimer’s disease,
advice on long-distance caregiving, materials about the importance of exercise, and tips for
improving communication with health care providers. The popular Age Page series of factsheets
presents varied information tailored to seniors and these publications can be read online or
downloaded. The wealth of materials specifically targeted to seniors reflects NIH’s recognition
of the importance of reaching out to this expanding audience.
Ethnicity can also require targeted communication strategies. NIH recently updated its Spanish-language Web site (http://salud.nih.gov). One of the major additions to this Web site is the inclusion of Spanish-language radio programming (http://salud.nih.gov/radio.asp).
The Spanish-language radio site does not mirror the English site, but features information of
particular interest and importance to Spanish-speaking communities at higher risk for
specific diseases.
Some NIH communications programs target a population vulnerable to or with a specific disease.
For example, NINDS developed the
Know Stroke. Know the Signs. Act in Time
public education campaign to help build awareness of the symptoms of stroke and the
need to act quickly. New treatments are available that greatly reduce the serious losses associated
with stroke. Knowing stroke symptoms, calling 911 immediately, and getting to a hospital are all
essential for preventing lifelong disability. This is a dramatic example of the need for the public
to know what science has learned about prevention or treatment of disease.
The Heart Truth,
the NIH national awareness campaign for women concerning heart disease includes locally
sponsored events, dissemination of materials, and free health screenings. Additionally, the
campaign reaches physicians to raise awareness of the sometimes overlooked vulnerability of
women to heart disease.
The National Kidney Disease Education Program,
an initiative that has elements of both a campaign and a clearinghouse, disseminates educational
materials tailored to minority groups at high risk and encourages dialogue about kidney disease
among African American families. NIH also reaches out to specialized populations, including Native
Americans, Asian Americans, those living in Arctic regions, and the elderly, through multiple Web sites
that have features designed to meet the unique needs of each group.
The audiences are not only national–NIH reaches out to international audiences through
collaborative communication campaigns about global health and emerging diseases issues
such as avian flu, SARS, and HIV/AIDS through Institutes such as NIAID and through FIC
programs.
NIH has a special role serving the public with information about rare diseases. The NIH Office
of Rare Diseases provides an informational database and a clearinghouse resource for
answering questions about diseases often misunderstood and misdiagnosed.
Rapidly Responding to Time-Sensitive Issues
In developing its communication programs, NIH anticipates and responds to current needs.
From recognizing the physical and mental health needs of Hurricane Katrina victims to becoming
aware of the growing problem of substance abuse and addiction among young people, NIH continues
to respond with appropriate communications materials. Increasingly, it is becoming evident that
children and adolescents are in need of tailored information resources to help them cope with
health conditions, peer pressure, and life events, such as the death of a sibling or parent
from disease. To address this trend, NIMH developed a number of brochures designed for parents,
community members, and rescue workers that explain how to help young people through crises.
These materials are readily available on the
NIMH Web site.
Since 2004, NIAAA has taken on the difficult challenge of underage drinking. NIAAA
launched
its Underage Drinking Research Initiative
with the goal of obtaining a more complete and integrated scientific understanding of factors that
promote initiation, maintenance, and acceleration of alcohol use among young people. The initiative
also addresses variables that influence the progression to harmful use, abuse, and dependence. A
unique aspect of this research is that it is framed within the context of overall psychological
and neurological development. NIAAA’s landmark initiative on underage drinking features Web
sites tailored to teens and college students and other resources.
The initiative has already led to concrete changes. First, it provided the scientific foundation for the
March 2007 Surgeon General’s Call to Action to Prevent and Reduce Underage Drinking.
It also is the basis for the ongoing work of the Interagency Coordinating Committee on Preventing
Underage Drinking. In addition, a series of meetings focusing on diagnosing alcohol use and
disorders among youth and screening for adolescent drinking have been held, and a supplement
of seven developmentally focused papers covering a broad range of underage drinking topics
has been accepted for publication in Pediatrics.
This year, NIDA and NIAAA partnered with Home Box Office (HBO) and the Robert Wood Johnson
Foundation to produce the documentary ADDICTION, which aired in spring 2007 on HBO.
The documentary’s nine segments explore new thinking about addiction as a brain-based
disease and the role imaging has played in enhancing our understanding of drug and alcohol
use, thereby leading to new treatments. NIH-sponsored research also is playing a key role
in removing the stigma that surrounds addiction, an important step in helping the 22.6
million Americans with this disease seek and obtain treatment. ADDICTION was honored
with a Governors Award by the Academy of Television Arts and Sciences (an Emmy), the highest
honor given by the Academy, reserved for individuals or organizations committed to important
social causes. More than 13 million people saw the documentary when it aired in March 2007.
Millions more have accessed the content through DVDs sold in bookstores and at
HBO.com,
podcasts, Web streams, a companion book, local and national outreach parties and screenings,
and prominent local and national media coverage. Much of the outreach was coordinated by
addiction and recovery advocacy groups, including Community Anti-Drug Coalitions of America,
Join Together, and Faces and Voices of Recovery with support from the Robert Wood Johnson
Foundation.
The airing of ADDICTION was accompanied by the release of two publications, NIAAA’s
Helping Patients Who Drink Too Much and NIDA’s Drugs, Brains, and Behavior–The
Science of Addiction. Helping Patients Who Drink Too Much is an update of a 2005 edition
and is targeted to primary care and mental health clinicians. It includes revised screening
tools and tips for managing patients with heavy drinking and alcohol use disorders.
The updated edition also has new resources, including education credits for physicians
and nurses (available through Medscape); support for medication-based therapy in nonspecialty
settings; a new handout with strategies to help patients reduce or quit drinking; a new
dedicated Web page devoted to the Guide; supporting resources for clinicians and patients;
and an updated PowerPoint presentation for educators. The second publication explains in
lay terms how science has revolutionized our understanding of addiction as a brain-based
disease. It also identifies risk factors for developing an addiction, lists prevention
strategies, and suggests new approaches to treatment.
Recognizing Problems and Taking Action
In recent years, physicians and researchers increasingly have become aware of the issue of
literacy as it relates to health. Researchers have found that almost one-half of the Nation’s
adults have trouble reading instructions or interpreting information from a graph or chart.
As a result, many people do not understand the instructions they receive from their health
care providers.30 Researchers also have found that low health literacy is more common among
older Americans and is linked to socioeconomic status; more than 66 percent of adults age 60
or older have marginal literacy skills, and 45 percent of all functionally illiterate adults
live in poverty. 31
The HHS Healthy People 2010 initiative established improving health literacy by the end of the
decade as a national health objective. The term “literacy” refers to the mastery of a range
of abilities, including reading, comprehending, and analyzing information; decoding instructions,
symbols, charts, and diagrams; weighing risks and benefits; and, ultimately, making decisions
and taking action. For example, to be considered “health literate” an individual should be able
to understand instructions given by physicians; instructions on medication labels; information
in health publications and on informed-consent documents; and data outlined on medical and
insurance forms. A significant precept of health literacy is the ability of the individual
to understand and take action. Health literacy arises from a convergence of education, health
services, and social and cultural factors, and brings together research and practice from diverse
fields. This challenge has particular relevance for health communications professionals, who
must consider health literacy when developing health materials and communications strategies
for different audiences, each with differing abilities, experiences, levels of knowledge, and
cultural beliefs and practices. By understanding these differences, professionals can develop
appropriate materials that have a greater potential for improving health and preventing disease.
Through health literacy efforts designed to help both the receivers and providers of health
information, NIH can improve health outcomes.
NIH has both scientific and communication initiatives in place to address the formidable
challenges of health literacy. OBSSR coordinates the trans-NIH initiative of scientific
grants on health literacy that is building national capacity for research on this issue.
Studies under way are examining the relationship between health literacy and patient adherence,
strategies such as using medical interpreters for patients with limited English proficiency,
and an electronic data entry tool to help parents of children with attention deficit hyperactivity
disorder communicate with health care providers, regardless of literacy levels.
NIH’s Office of Communications and Public Liaison (OCPL), connecting the research with the public
and serving as liaison to HHS on health literacy activities, has established the “Clear Communication,”
initiative that is focusing on objectives of health literacy–providing information in the form and with
the content that is accessible to specific audiences based on cultural competence and incorporating such
tactics as plain language and new technologies. The first phase of the “Clear Communication” program involves
building upon sound research results provided by the trans-NIH initiative. OCPL is creating a number of
resources to help the trans-NIH communicators and health communicators outside NIH reach audiences
“where they are” and overcome health literacy barriers. One program is redevelopment of the nationally recognized resource
“Making Health Communication Programs Work,”
which comprehensively addresses clear communication and reflects the best practices of
all NIH ICs as a shared resource. OCPL maintains a
resource Web site
that includes synopses of research work under way and will house research results as
they become available.
Sometimes health issues span Institutes and can be coordinated through offices in the
Office of the Director to bring attention to identified problems. For example, an estimated
14 million American women may have vulvodynia (chronic vulvar pain) at one point in their
lives, although for many women the condition remains undiagnosed. Vulvodynia can have a
profound impact on a woman’s quality of life. The Office of Research on Women’s Health
(ORWH) is addressing the needs of women in understanding the disease and physicians in
recognizing it.
Health disparities for many minority populations are often further exacerbated by poor access
to health information. Recognizing this problem, NIH has programs in place designed to advance
the health of minorities. The National Network of Libraries of Medicine (NNLM), which has more
than 5,800 full and affiliate members, is the core component of NLM’s outreach programs. Partnering
with community organizations, NNLM has funded many projects, such as the Consumer Health Resource
Information Service, which is located in 21 churches across the State of Tennessee. The program
aims to provide the congregations with health information twice a month. In addition, health
screenings, such as blood pressure checks, also are made available. NNLM continues to grow with
the addition of public libraries at the community level that are joining the health sciences
libraries as network members.
The Early Detection of Oral Cancer campaign is another NIH program designed to eliminate
health disparities. The program is centered on developing educational materials concerning
oral cancer targeted toward African American men, who have the highest risk of oral cancer
and the lowest 5-year survival rate–only 35.6 percent. The first piece is a brochure called
Are You at Risk for Oral Cancer? What African American Men Need to Know and is being pretested
in Washington, D.C.; Chicago; Los Angeles; and Columbia, South Carolina. The brochure is part
of a series of educational tools, including factsheets, posters, and print and audio public
service announcements that will be targeted for distribution to African American community
groups across the country.
In addition to developing materials, NIH reaches out to minorities by developing
communications networks, such as the American Indian and Alaska Native (AI/AN) Health
Communications Workgroup, established by NIAMS in 2005 with other ICs. Comprising
representatives from a number of NIH ICs, the workgroup has presented two seminars:
“Taking Action: Health Promotion and Outreach with American Indians and Alaska Natives”
and “Cultural Competency Strategies for Indigenous Health Promotion… A Dakota
Perspective.” In 2007, the workgroup finalized a literature review begun for the
Taking Action seminar by experts, internal and external to NIH, and published the
review to be widely distributed to the public, especially health communicators.
Eliminating health disparities is a continuing challenge requiring persistence. NICHD’s Sudden
Infant Death Syndrome (SIDS) Outreach in Minority Communities campaign is a case in point.
The program is in its 13th year, and death rates from SIDS have declined by 50 percent
among African Americans. Nonetheless, infants from this community are still twice as likely
to die from SIDS as are White infants. NIH is collaborating with national African American
women’s organizations to support community and neighborhood workshops that focus on important
yet easy steps to help reduce the risk of SIDS. In Mississippi, where the infant mortality
and SIDS rates are among the highest in the nation, small stipends from NIH help community
organizations conduct SIDS risk-reduction workshops in rural areas.
An innovative community-based program called We Can! (Ways to Enhance Children’s Activity
& Nutrition), begun in 14 communities nationwide, including Boston, Massachusetts, and
Montgomery County, Maryland, is addressing the national childhood obesity epidemic by
providing educational programs and materials. We Can! materials include tips on how to
encourage healthy eating, increase physical activity, and decrease sedentary activity,
or “screen” time, such as TV watching.
Partnering With Health and Advocacy Organizations
NIH ICs receive regular input from nonprofit groups, such as voluntary health agencies, and
these organizations can increase the reach of NIH health communications and outreach programs.
NIH interactions with health and advocacy organizations range from routine meetings to the
establishment of novel programmatic initiatives and partnerships. Such programs allow for
cofunding of research, nonprofit input into the design and scope of NIH research initiatives,
and the creation of new programs and collaborations. These efforts also enable NIH to receive
regular input from its public constituencies and to forward research announcements, research
results, agency news, and scientific press releases. Just a few examples include:
- NCI created CARRA–Consumer Advocates in Research and Related Activities–to draw on the experience
of people affected by cancer to represent the views of cancer survivors and family members with
respect to the agency’s daily activities.
- NIMH sponsors an Outreach Partnership Program that enlists national and State organizations
in partnerships to help bridge the gap between research and clinical practice by disseminating
the latest scientific findings; nforming the public about mental disorders, alcoholism,
and drug addiction; and reducing the stigma and discrimination associated with these illnesses.
- NIAMS is working with a coalition of professional and voluntary organizations, all concerned
with the agency’s programs and findings related to diseases of bone, joints, muscle, skin,
and connective tissues.
- An NIH Partners in Research Program supports 2-year pilot and/or feasibility studies of
innovative activities designed to improve public understanding of biomedical and behavioral
research, develop strategies for promoting collaboration between scientists and the community
to improve the health of the public, and identify the conditions (e.g., settings and approaches)
that will enhance the effectiveness of such activities. The long-term objectives of this
initiative are (1) to study methods and strategies to engage and inform the public regarding
health science in order to improve public understanding of the methods and benefits of
publicly funded research and (2) to increase scientists’ understanding of and outreach to
the public in their research efforts.
Outreach to the Scientific and Research Communities
In addition to communicating science and health news and information, NIH reaches out to the scientific
and research communities to share information and obtain input on policy issues. For example, in 2006
when NIH undertook the update of its data-sharing policies for research applications involving genome-wide association studies, NIH initiated a public consultation process to inform NIH policy development.
This included a town hall meeting and, later, a formal Request for Information on the proposed policy
that was issued in the Federal Register and publicized via press release. Currently, NIH is engaged in
a profound effort to enhance its peer review system. The effort was launched in summer 2007 with a
listening, or consultation phase, to ensure that NIH’s examination of the system is informed by the
concerns and ideas of stakeholders. Widely publicized regional meetings with the biomedical research
community, local meetings with professional societies and health advocacy groups, a Web page taking
online comments, and Federal Register Request for Information were all part of the outreach.
In addition, in the last year and on a quarterly basis, the NIH Director has begun communicating
directly to voluntary health agencies, the interested public, policy leaders, extramural
grantees, administrators, and research program offices. These
“From the Desk”
communications have been effective in giving and soliciting information.
Conclusion
As the paradigm for health care in the 21st century continues to evolve, NIH strives to develop
appropriate communication outlets for its varied audiences. With consumers more involved in health
and health care decision-making, the need for authoritative and timely information, delivered
through the right conduits in the right forms, is all the more compelling. NIH is refining
and reshaping its rich and varied communications program, focusing on certain topics and
targeting specific populations as appropriate. It is using all the new avenues of technology–the
Web, narrowcasting of television and radio, and the full range of new media–to communicate
key health messages in forms and formats that resonate with the needs of diverse audiences.
NIH will continue to evaluate how it reaches its audiences, always searching for innovative
ways to keep the public informed about the latest developments in science and medicine in
order to improve health.
Notable Examples of NIH Activity
Key for Bulleted Items:
|
E = Supported through Extramural research
I = Supported through Intramural research
O = Other (e.g., policy, planning, and communication)
COE = Supported through a congressionally mandated Center of Excellence program
GPRA Goal = Concerns progress tracked under the Government Performance and Results Act
|
|
Delivering Health News and Information to the Public
Clinical Trials Education: Materials represent a collection of over 20 resources developed
to increase awareness and participation in cancer prevention and treatment clinical trials.
These materials include workbooks, a guide for community outreach, a trainer’s guide, online
courses for health professionals, DVDs, and slide sets to assist in education programs.
- For more information, visit http://cancer.gov/publications
- This example also appears in Chapter 2: Cancer and Chapter 3: Clinical and Translational Research.
- (E/I) (NCI)
New Publications: In FY 2006, NIH distributed 3.1 million publications on
mental disorders. During this year, NIH also released two new publications: Anxiety Disorders
and Schizophrenia. In FY 2007, NIH developed a series of booklets and factsheets about what
community members, parents, and rescue workers can do to help children cope after violence
and disasters.
MedlinePlus/MedlinePlus en Español: NIH employed new methods to increase awareness of its
MedlinePlus databases. Weekly podcasts by NLM’s Director were initiated to provide timely reports
on health news; NIH MedlinePlus The Magazine was rolled out at a press event on Capitol Hill
attended by members of Congress and guest celebrity Mary Tyler Moore, featured on the cover.
The magazine is distributed free to 40,000 physician offices and has covered stories on cancer,
diabetes, and heart attack. NIH expanded the content and features of the English and Spanish
MedlinePlus Web sites and the associated GoLocal sites that provide information on local health
resources for approximately one-third of the U.S. population. MedlinePlus was one of two U.S.
winners of the 2005 Award at the World Summit on the Information Society.
- For more information, see http://www.medlineplus.gov
- This example also appears in Chapter 3: Disease Registries, Databases, and Biomedical
Information Systems.
- (I) (NLM)
Toxicology and Environmental Health: To inform the general public about
toxicology and environmental health, NIH developed several new tools, including ToxMystery®,
an interactive learning site for 7- to 10-year-old children; and Tox Town®, which uses color,
graphics, sounds, and animation to enhance learning about chemicals, the environment,
and public health.
Medicine in the Media Course: NIH presents a free annual training opportunity to
help develop journalists’ ability to evaluate and report on medical research. Now in its sixth year,
the course examines the challenges and opportunities inherent in the process of communicating the
results of medical research to the public. Stressing an evidence-based approach and reexamining
intuitive beliefs about medicine, the course prepares participants for the crucial task of interpreting
and evaluating research findings including statistics, selecting stories that hold meaningful messages
for the public, and placing them in the appropriate context. Sessions are interactive, with
hands-on opportunities to apply lessons learned, and incorporate journalists’ special perspectives
on the public’s need for useful medical knowledge. The “Medicine in the Media” program was created
to address a growing need to improve the reporting of scientific and medical research findings by
the media. The program is highly competitive and attracts media and journalism professionals from
around the country for a 3-day intensive workshop. The interactive program lays out the critical
basics of differentiating strong from weak scientific information, well-designed versus poorly
designed scientific studies, and “strength of opinion versus the strength of evidence.” Feedback
from participants indicates that the program changed their fundamental understanding of scientific
news in terms of what is worthy of reporting and providing appropriate context when covering new
research findings and a balanced presentation of the strength and relevance of the findings.
Participants frequently recommended the program to colleagues.
COPD: Learn More, Breathe Better: Through its new education campaign,
“COPD: Learn More, Breathe Better,” NIH is raising public and professional awareness
about chronic obstructive pulmonary disease (COPD). Launched in January 2007, the
campaign is a cooperative effort, engaging the public, health care providers, health
insurers, and researchers in improving COPD diagnosis and treatment. The campaign relies
upon print and radio public service announcements and on printed informational materials
intended for distribution to COPD patients, to persons at risk for the disease, to health
care professionals, and to community-level organizations. Joining NIH in implementing this
new campaign by promoting it among their constituencies are more than 20 partners,
including the American Academy of Family Physicians, the American Lung Association, the
American Thoracic Society, the American College of Chest Physicians, and the U.S.
COPD Coalition.
Disseminating Evidence-Based Health Information on Diabetes and Digestive and Kidney
Diseases: The National Diabetes Education Program (NDEP) and the National Kidney
Disease Education Program (NKDEP) were created to disseminate evidence-based educational
material on diabetes and kidney disease, respectively. For example, the NDEP encourages
people to take “small steps” to prevent type 2 diabetes. The NKDEP encourages African
American families to discuss kidney disease at family reunions. Both programs tailor materials
for minority groups at high risk. Information clearinghouses also provide key health
information for the public. Recent campaigns raised awareness of celiac disease and interstitial
cystitis. The Weight-Control Information Network provides science-based information on topics
such as obesity and nutrition.
Ways to Enhance Children’s Activity & Nutrition (We Can!):
This national public education outreach program, focusing on parents and families
in home and community settings, is designed to help children 8 to 13 years old
achieve and maintain a healthy weight. We Can! program materials offer tips and
activities to encourage healthy eating, increase physical activity, and reduce
sedentary or screen (such as television) time. Many national partners and
supporting organizations are promoting the We Can! messages and materials, and
the program is being implemented in a variety of settings. In 2007, NIH began
the We Can! city program to assist towns and cities in mobilizing their communities
to prevent childhood obesity. The first three cities that will participate in the
new effort have pledged to offer We Can! evidence-based obesity prevention programs
to parents and youth in collaboration with community-based partners. In addition,
each city will distribute We Can! tips and information to city employees.
National Eye Health Education Program (NEHEP): This program focuses on public
and professional education programs that encourage early detection and timely treatment of
glaucoma and diabetic eye disease and the appropriate treatment for low vision. A formal
planning process in 2006 outlined a 5-year agenda for NEHEP that will now include programs
in age-related macular degeneration and meeting eye health needs of older adults. The
travelling “EYE SITE” exhibit has toured the Nation, working with over 100 vision-related
organizations to offer more than 250 public events since 2001. The NEHEP Partnership with
public and private organizations coordinates development and dissemination of education
programs targeted to a variety of audiences.
Alzheimer’s Disease Education and Referral (ADEAR) Center: The ADEAR Center
is the Federal government’s primary source of information for patients, caregivers, health
providers, policymakers, and the general public on Alzheimer’s disease and age-related
cognitive change, including diagnosis, treatment, services, and research. The Center
maintains a national database of clinical trials and develops easy-to-read materials in
English and some in Spanish.
NIA Information Center (NIAIC): Through its Web site and toll-free
telephone lines, the NIAIC provides information, available in English and Spanish, aimed
at maintaining and improving the health of older adults by encouraging them to exercise,
providing advice on long-distance caregiving, suggesting ways to improve communication
with health care providers, and providing the latest information about research on aging.
Age Page factsheets offer comprehensive, easy-to-read information on nearly 50 topics. A
new Web-based newsletter will provide updates on health and NIA activities to the public,
policymakers, and researchers.
NIAID HIV Vaccine Research Education Initiative (NHVREI): This new national
initiative is designed to educate the public about HIV vaccine research, especially at-risk
populations such as African Americans, Hispanics, men who have sex with men (MSM), and women
at high risk of HIV infection. The goal is to increase awareness of the urgent need for an
HIV vaccine within the communities that are most affected by HIV/AIDS, create a supportive
environment for current and future volunteers in HIV vaccine trials, and improve the public’s
perceptions and attitudes toward HIV vaccine research. The NHVREI Local Partnership Program
provides support to partner organizations in targeted communities to help achieve the initiative’s
goals.
Information Clearinghouses: NIAMS operates the NIAMS Information
Clearinghouse and the NIH Osteoporosis and Related Bone Diseases National Resource
Center. These clearinghouses produce and distribute health education materials to
patient and health professionals on a variety of diseases of bone, muscle, joint,
and skin. The Resource Center also manages the health promotion plans associated with
the recent Surgeon General’s report on bone health and osteoporosis.
NIDCD Information Clearinghouse: NIDCD’s Information Clearinghouse
disseminates free health information in the areas of hearing, balance, smell, taste,
voice, speech, and language to inquiring members of the public. For the years 2006-2007,
the NIDCD Information Clearinghouse has maintained a toll-free phone and TTY number for
the public and has ensured that NIDCD publications remain current and timely by adding
or updating bilingual factsheets and other educational materials for dissemination to
the public. In addition, Clearinghouse staff attended or provided materials for exhibits
at 31 professional conferences and health fairs around the country. Clearinghouse staff
also performed research to help in the planning of the new noise-induced hearing loss
campaign. This included conducting focus group testing and leading a workshop seeking
input from key advocacy organizations.
WISE EARS!®: WISE EARS! is NIH’s national public education campaign
against noise-induced hearing loss (NIHL) to increase awareness among the public and workers.
For the years 2006-2007, NIH distributed free bilingual WISE EARS! materials, available online
and through its toll-free information clearinghouse, to health professionals, students and
teachers, community organizations, government officials, and the general public. NIH also
conducted an evaluation of the WISE EARS! program to determine how well the campaign is
meeting its objectives and to make recommendations for the future direction of the campaign.
Based on the evaluation’s key findings, NIH now plans to refocus its NIHL campaign by targeting
children ages 8 to 12, by forging more mutually beneficial partnerships, and by making use
of delivery channels with the highest potential to attract and engage its audience.
Exhibitions for the Public: NIH continues to present lively and informative
exhibitions that enhance the awareness and appreciation of science, medicine, and history.
Changing the Face of Medicine: Celebrating America’s Women Physicians closed in FY 2006
after a highly successful 25-month run, but lives on in a traveling version that is touring
the country. A new exhibition, Visible Proofs: Forensic Views of the Body, opened in
February 2006 and will continue until early 2008. Scores of school and community groups
visit the exhibitions at NLM.
Genetics Home Reference: The Genetics Home Reference Web site
provides basic information about genetic conditions and the genes and chromosomes
related to those conditions. Created for the general public, the site was expanded
to include summaries for more than 225 genetic conditions, more than 380 genes, all
the human chromosomes, and information about disorders caused by mutations in mitochondrial
DNA.
Patient and Health Professional Education and Outreach: NIH provides comprehensive
cancer information to those at risk and to patients, caregivers, and health care providers.
This information ranges from prevention, through treatment, to end-of-life topics. For example,
clinical sites across the country extensively utilize NIH print and Web-based materials to
support their educational programs. The Cancer Information Service (CIS) effectively communicates
information through a Partnership Program to help reach those with limited access to health
information; an Information Service that provides cancer information by telephone, TTY, instant
messaging, and e-mail; and a research program that helps advance health communication
practices.
Reaching Different Audiences
Podcast on Women’s Health: In 2007, NIH began a series of podcasts
entitled “Pinn Point on Women’s Health” featuring ORWH Director Dr. Vivian W.
Pinn in conversation with other NIH scientists. The podcasts highlight extramural
and intramural research and current topics of importance to sex/gender and women’s health.
Promoting Early Detection of Oral Cancer in African American Men: NIH is
developing a new series of oral cancer education materials specifically for African American
men, who have the highest risk of oral cancer and the lowest 5-year survival rate (only 35.6
percent) of any population in the United States. This is the first national-level effort of
its kind. The first piece in the series, “Are You at Risk for Oral Cancer? What African
American Men Need to Know,” is now being pretested in Washington, DC; Chicago; Los Angeles;
and Columbia, South Carolina. The brochure–along with other complimentary education tools,
such as fact sheets, posters, and both print and audio public service announcements–will be
distributed to African American community groups around the country.
- This example also appears in Chapter 2: Cancer and Chapter 2: Minority Health and Health Disparities.
- (E/I) (NIDCR, NCI)
Evidence-Based Information on CAM:
- NCCAM provides extensive sources of evidence-based information on CAM through its Web
site and clearinghouse. In 2006 its Web site had more than 2.6 million visitors and was
cited by Prevention magazine for “Best Alternative Medical Information.” It has also been
cited by the World Health Organization as a model for evidence-based CAM.
- CAM on PubMed, a database developed in partnership with the National Library of Medicine,
now indexes more than 467,000 scientific articles related to CAM and makes them available
and accessible to health professionals and the general public.
Web-Accessible List of Rare Diseases Terms: Making Research Information About Rare Diseases
Available to the Public: Each day, the Office of Rare Diseases (ORD) receives inquiries
about specific rare diseases about which inquirers cannot find information. Over the years, ORD
has maintained a list of rare diseases names from a number of sources. With the arrival of the
Internet and increased Web sophistication by patients and their families, ORD began posting a list
of rare diseases and conditions, with synonyms and links to federally funded databases. In 2000,
ORD integrated into its database a similar European database, called Orphanet, and a list from the
Engelhorn Foundation in Belgium. Since FY 2006 ORD has linked its rare diseases terms to the
following databases:
NLM Gateway,
PubMed,
Online Mendelian Inheritance in Man (OMIM),
Genetics Home Reference (GHR), and
ClinicalTrials.gov.
The “Rare Diseases Terms” on the ORD Web site represents the most comprehensive listing of rare
diseases. As such, it is a resource used by many visitors to the ORD site seeking information
about rare diseases. ORD will broaden the availability of information about rare diseases on the
ORD Web site by connecting a database of rare diseases questions and answers with a link to the
rare diseases terms. Currently, the database contains 6,827 distinct rare diseases terms. In the
last 2 years, 386 diseases were deleted because information became available that showed that the
prevalence was above 200,000 in the United States, 709 new terms were added, 4,177 terms were reviewed
and revised, and the available information links were expanded.
The Heart Truth: The Heart Truth, NIH’s national awareness campaign
for women about heart disease, continues to extend the reach of campaign messages and promotion
of the Red Dress as the national symbol for women and heart disease. Hundreds of locally
sponsored Heart Truth events have taken place, and over a billion media impressions have been
achieved. The Heart Truth Road Show helps participants learn about heart disease risk factors,
provides free health screenings, and disseminates educational materials. In April 2006, the
campaign launched the “Heart Truth Champions” program, to recruit health advocates and
educators in local communities to increase awareness about women and heart disease. National
Wear Red Day—the first Friday in February—has become an annual event when Americans wear red
clothing and accessories in recognition of the importance of heart disease in women.
Never Too Early—The Milk Matters Campaign: The risk for osteoporosis
actually starts in childhood. Thus, NIH supports a public health campaign to help increase
calcium consumption among children and teens, ages 11 to 15, a time of critical bone growth.
Milk Matters is designed to educate parents, teachers, and health care providers about how
most tweens and teens are not getting enough calcium from their diets. The campaign features
materials and publications in English and Spanish.
Science Education Partnership Award (SEPA) Program: SEPA increases the public’s
understanding of medical research by (1) increasing the pipeline of future scientists and
clinicians, especially from minority, underserved, and rural kindergarten to grade 12 (K-12)
students and (2) engaging and educating the general public on the health-related advances made
possible by NIH-funded research. By creating relationships among educators, museum curators,
and medical researchers, SEPA encourages the development of hands-on, inquiry-based curricula
that inform participants about timely issues including obesity, diabetes, stem cells, and
emerging infectious diseases. Additionally, SEPA projects are designed to enhance public trust
by focusing on topics such as the clinical trials process, patient safeguards, and medical
research ethics. Through SEPA exhibits at science centers and museums, the program provides
educational and community outreach activities to tens of thousands of people every year. Moreover,
SEPA is helping to bridge the educational gap and provide the next step in research and clinical
pipelines for K-12 students interested in pursuing a career in biomedical science and providing
professional development opportunities for teachers. Culturally appropriate projects have been
developed to enhance the participation of African American, Hispanic, Alaska Native, American
Indian, and Native Hawaiian communities. In FY 2007, SEPA supported 70 projects, with 50 targeting
middle and high school students and 20 based in science centers and museums.
- For more information, see http://www.ncrrsepa.org
- This example also appears in Chapter 2: Minority Health and Health Disparities.
- (E) (NCRR)
Cancer.gov in Español: This Web site is designed to reach the Hispanic-Latino
population—the fastest growing online audience in the country—to communicate the message that
cancer can be prevented and treated and to offer information on all aspects of the disease.
The site is specifically tailored for Hispanics and Latinos, with pages organized around issues
of greatest concern. The site will be updated using evidence-based approaches and emerging
technologies to ensure that accurate, relevant, and audience-appropriate information is provided.
The site demonstrates the commitment to reducing cancer health disparities by making information
readily available to underserved populations.
- For more information, see http://www.cancer.gov/espanol
- This example also appears in Chapter 2: Cancer and Chapter 2: Minority Health and Health Disparities.
- (E) (NCI)
NIH Senior Health Web Site: NIHSeniorHealth.gov enables the growing number
of “wired seniors” to find credible aging-related health information in an online format
that is compatible with their cognitive and visual needs, as evidenced by NIH-supported research.
Conceived by NIA and jointly developed with NLM, the Web site includes 33 health topics
developed by 12 NIH Institutes. In 2006, 760,000 visitors viewed 1.5 million Web pages on
the site. To further enable older adults to locate information and participate in their own
health decisions, NIA has developed a senior-friendly curriculum for people who train older
adults to use computers.
Underage Drinking Research Initiative: In 2004, NIH launched this ongoing
initiative with the goal of obtaining a more complete and integrated scientific understanding
of the environmental, biobehavioral, and genetic factors that promote initiation, maintenance,
and acceleration of alcohol use among youth, as well as factors that influence the progression to
harmful use, abuse, and dependence, all framed within the context of overall development.
- Provided the scientific foundation for The Surgeon General’s Call to Action to Prevent
and Reduce Underage Drinking (released March 6, 2007) and for the ongoing work of the
Interagency Coordinating Committee on Preventing Underage Drinking.
- Convened scientific meetings of experts including the Underage Steering Committee that met
four times over a 2-year period; a Meeting on Diagnosis of Alcohol Use Disorders among
Youth (April 2006); and a Meeting on Screening for Child and Adolescent Drinking and AUDs
among Youth (June 2007).
- Issued three RFAs including Underage Drinking: Building Health Care System Responses
(four projects awarded FY06); Impact of Adolescent Drinking on the Developing Brain; and Alcohol,
Puberty and Adolescent Brain Development.
- Published Alcohol Research & Health Vol. 28, Number 3—Alcohol and Development in Youth:
A Multidisciplinary Overview.
- Published a supplement of seven developmentally focused papers covering a broad range of
underage drinking topics (accepted for the journal Pediatrics).
NIH Health Partnership Program and Community Health Center: The Health
Partnership Program (HPP) is a community-based, collaborative research program between NIH
and Washington, D.C., area representatives. Through research with underrepresented patients
affected by arthritis and other rheumatic diseases, the HPP studies health disparities and
their causes and provides direction for improving the health status and outcomes of affected
minority communities. Its Community Health Center (CHC) is the platform for HPP’s research,
education, and training activities. The Washington, D.C., Center gives the community access
to specialized care and health information, and NIH researchers access to patients most
affected by rheumatic diseases. Recently, NIH published “Exploring Perceptions About the
Ethics of Clinical Research in an Urban Community.”
Know Stroke in the Community Educational Campaign: In 2004, NIH entered a
first-time partnership with the Centers for Disease Control and Prevention (CDC) to launch a
new grassroots education program called Know Stroke in the Community. The program was designed
to identify and enlist the aid of community leaders called “Stroke Champions,” who worked to
educate communities about the signs and symptoms of stroke. The program focuses on reaching
African Americans, Hispanics, and seniors in communities that have the health care systems
in place to treat stroke. In 2005-2006, the program had been implemented in 11 cities,
educating 168 Stroke Champions who have conducted more than 600 community events.
- This example also appears in Chapter 2: Minority Health and Health Disparities and Neuroscience and Disorders of the Nervous System.
- (E/I) (NINDS)
InfoSIDA: NIH introduced infoSIDA, a Spanish-language version of the
AIDSinfo Web site, a HHS established site that offers the latest federally approved
information on HIV/AIDS clinical research, treatment and prevention, and medical practice
guidelines. InfoSIDA features a customized home page and a search engine that locates
Spanish-language resources within AIDSinfo. The steering group spans NIH (OAR, NIAID, NLM),
FDA, HRSA, CMS, and CDC.
Minority Health: NIH works in a number of ways to share health information and develop the capacity of minority-serving
educational institutions to access and use health information. NLM-sponsored programs focused on Historically Black Colleges and
Universities (HBCUs), the National Medical Association and their more than 25,000 physicians and associated patients of African
descent, health information networks for refugees, special Web sites with health information for specific populations (Asian
Americans, American Indians, peoples of the Arctic), and information fellowships for representatives from American Indian tribes,
Alaska Native villages, and the Native Hawaiian community.
The Science of Healthy Behaviors: The newest in a series of curriculum supplements distributed free of charge to teachers in
grades K-12, this supplement introduces middle school students to the scientific study of behavior. It is a self-contained,
teacher-ready guide to eight days of guided-inquiry science lessons that explore how behavioral and social factors influence
health. The supplement is consistent with the National Science Education Standards and aligned to State standards for science,
mathematics, English language arts, and health.
Rapidly Responding to Time-Sensitive Issues
Helping Patients Who Drink Too Much: A Clinician's Guide: In January 2007, NIH issued an update to its 2005 edition of the
Clinician's Guide. Targeted to primary care and mental health clinicians, the Guide presents a user-friendly, research-based
approach to screening, diagnosing, and managing patients with heavy drinking and alcohol use disorders. The updated Guide offers
the following new resources: CME/CE credits for physicians and nurses available through Medscape; support for medication-based
therapy in nonspecialty settings; a new handout with strategies to help patients reduce or quit drinking; a new dedicated Web page
devoted to the Guide and supporting resources for clinicians and patients; and an updated PowerPoint presentation for educators and
instructors. NIH has worked closely with several organizations to disseminate the Guide to their memberships.
HBO “Addiction” Documentary: NIH collaborated with Home Box Office (HBO) to create a 90-minute documentary, “
Addiction,” which aired on March 15, 2007. An NIH expert in the treatment of alcoholism was one of several principal spokespersons
for the documentary and was featured in a supplementary broadcast on treatment advances. Several NIH grantees appeared in the documentary.
A general-audience HBO book was produced to accompany the film.
- For more information, see http://www.hbo.com/addiction
- This example also appears in Chapter 2: Chronic Diseases and Organ Systems.
- (E) (NIAAA, NIDA)
Science of Dissemination and Implementation: Relatively little is known about how to ensure that the lessons learned from research
inform and improve the quality of health and human services in the population at large. The goals of the program announcement,
Dissemination and Implementation Research in Health, and conference, Building the Science of Dissemination and Implementation in
the Service of Public Health (September 2007), are to support innovative approaches to identifying, understanding, and overcoming
barriers to the adoption, adaptation, implementation, and maintenance of evidence-based practices by health care providers,
insurers, policymakers, and the public.
- For more information see http://grants.nih.gov/grants/guide/pa-files/PAR-07-086.html
- For more information see http://obssr.od.nih.gov/di2007/index.html
- This example also appears in Chapter 3: Clinical and Translational Research.
- (E) (NCI, NHLBI, NIAAA, NICHD, NIDA, NIDCD, NIDCR, NIMH, NINR, OBSSR, ODS)
The Rapid Response Program: In April 2002, the Task Force on College Drinking released its seminal report “A Call to
Action: Changing the Culture of Drinking at U.S. Colleges.” As part of its college focus, NIH initiated support of
collaborations between
university personnel who have responsibility for alcohol programs on various campuses and established college drinking
researchers to implement and evaluate programs to reduce underage alcohol use and its consequences.
- December 2002: ”Research Partnership Awards for Rapid Response to College Drinking Problems.” Five U01 (cooperative agreement) 5-year grants were awarded.
- June 2003: “Rapid Response to College Drinking Problems.” Fifteen 3-year grants were awarded.
- This rapid funding mechanism (U18 - cooperative agreement) supports timely research on interventions to prevent or reduce alcohol-related problems among college students. It was intended to support studies of services or interventions that could capitalize on “natural experiments” (e.g., unanticipated adverse events, policy changes, new media campaigns, campus-community coalitions, etc.)
- Each U18 grantee was required to partner with a U01 grantee. Together, these pairs, working with NIH Scientific Staff Collaborators, jointly design, develop, implement, and evaluate college drinking projects on their campuses.
- This example also appears in Chapter 2: Chronic Diseases and Organ Systems, Chapter 3: Epidemiological and Longitudinal Studies, and Chapter 2: Life Stages, Human Development, and Rehabilitation.
- (E) (NIAAA)
Recognizing Problems and Taking Action
National Network of Libraries of Medicine: With more than 5,800 full and affiliate members, the Network is the core component of
the National Library of Medicine's outreach program and its efforts to reduce health disparities and to improve health
information literacy. The Network also seeks to build and improve collaborations with community-based organizations as an
effective means of reaching these populations. A major new initiative is the development of a nationwide emergency plan to ensure
backup health library services in the aftermath of a disaster and establish librarians as key community resources in disaster
planning and response. In 2006, new 5-year contracts were signed for eight Regional Medical Libraries in the Network.
- For more information, see http://nnlm.gov/
- This example also appears in Chapter 2: Minority Health and Health Disparities.
- (I) (NLM)
Health Disparities Research Forum: NIH will be convening a 3-day forum in the spring of 2008. The purpose of the forum is to
highlight the collective progress of NIH and its HHS government partners, grantees/academicians, community organizations, and
health care providers in implementing programs and strategies in the major priority areas, identified in the first NIH Strategic
Research Plan and Budget to Reduce and Ultimately Eliminate Health Disparities. The objectives of the Research Forum are to:
- Identify best practices, challenges, programs, and existing or potential gaps and practices in research initiatives, strategies, and funding,
- Promote research partnerships by identifying opportunities to strengthen partnerships, by establishing new partnerships within NIH and
across HHS,
within and between academic institutions and researchers, and within and between community organizations and health care providers, and
- Strengthen the health disparities research collaborations at the government, academic, and community levels.
Blending Initiative: Bench to Bedside to Community: Efforts to systematically move science-based interventions and practices into
community settings are exemplified in the testing of drug abuse treatment approaches directly in the community settings where
they will be used by drug treatment professionals trained to implement them. This work is occurring through the National Drug
Abuse Treatment Clinical Trials Network (CTN) at NIH, which involves practitioners from community treatment programs (CTPs) not
only in formulating research protocols, but also in providing real-world feedback on their success and feasibility. The adoption
of the addiction medication buprenorphine by a growing number of CTPs treating patients with opioid addiction is an example of
real culture change issuing from NIH clinical research. A similar approach is under way to enhance treatment for drug-addicted
individuals involved with the criminal justice system through research supported under the Criminal Justice Drug Abuse Treatment
Studies (CJ-DATS) initiative. It seeks to achieve better integration of drug abuse treatment for criminal offenders with other
public health and public safety forums and is a collaborative effort by NIH and multiple Federal agencies and health and social
service professionals. These initiatives are helping to change the culture of how drug abuse treatment is delivered in this country.
Understanding and Promoting Health Literacy: The HHS Healthy People 2010 initiative established a national health objective to
improve health literacy by the decade's end. While many diseases and conditions can be prevented or controlled, too often people
with the greatest health burdens have few fact-finding skills, the least access to health information, and least effective
communication with health care providers. This program announcement supports research that increases our understanding of the
health literacy problem and its relationship to health disparities as well as the development of interventions to overcome the
adverse consequences of low health literacy.
- For more information, see http://grants.nih.gov/grants/guide/pa-files/PAR-07-020.html
- This example also appears in Chapter 3: Clinical and Translational Research and Chapter 2: Minority Health and Health Disparities.
- (E) (OBSSR, AHRQ, NCI, NHLBI, NIA, NIBIB, NICHD, NIDCD, NIDCR, NIEHS, NIMH, NINR, NLM)
Outreach to the Scientific and Research Communities
The NIMH Outreach Partnership Program: This program is a vital element in the broad NIH outreach effort to deliver science-based
information to the public, health professionals, constituency groups, and all interested stakeholders.
Partners in Information Access for the Public Health Workforce (PH Partners): PH Partners, a 12-member public-private
collaboration initiated by NIH, Centers for Disease Control and Prevention, and National Network of Libraries of Medicine assists
the public health workforce to make effective use of electronic information sources. The Partners Web site (PHPartners.org)
provides unified access to public health information resources produced by all members of the Partnership, as well as other
reputable organizations. In FY 2006, the Web site was expanded with more than 400 new links and two new categories: Fellowships
and Upcoming Meetings. One of the most popular resources on the site is the Healthy People 2010 Information Access Project.
27For more information, see https://ice.iqsolutions.com/ninds/profstrokepubs.asp
28Although many ICs have specific language that is variable (some as specific as
mandating clearinghouses or education programs or others indicating the responsibility to make science-based information available to the
public), the general authority is covered by Section 402(e) of the PHS Act.
29The original mandate, the Food and Drug Modernization Act
of 1997 (Pub. L. No. 105-115), was enhanced by the Food and Drug Administration Amendments
Act of 2007 (Pub. L. No. 110-85).
30Talking the Talk, Law of Averages: Casting a Wide Net in Health
Literacy Efforts with Rima Rudd, Sc.D.; Facts of Life: Issue Briefings for Health Reporters, Vol. 8, No. 3, March 2003.
31Talking the Talk, 2003.
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