The Health Information National Trends Survey:
Research From the Baseline
BRADFORD W. HESSE AND RICHARD P. MOSER
National Cancer Institute, Bethesda, Maryland, USA
LILA J. FINNEY RUTTEN
SAIC, Rockville, Maryland, USA
GARY L. KREPS
George Mason University, Fairfax, Virginia, USA
The decades surrounding the turn of the millennium will be remembered as a time of
extraordinary opportunity in cancer communication. In 1990, the number of age-
adjusted deaths due to cancer in the U.S. population began a slow steady decline
after a century of disparaging increase. Reasons for this decline have been attributed
to long-awaited successes in primary prevention, especially related to tobacco, and
early detection for cervical, breast, prostate, and colorectal cancers, as well as
advances in treatment. This was also a time of unparalleled change in the cancer
communication environment. Scientific health discoveries escalated with the com-
pletion of the Human Genome project in 2003, and penetration of the Internet made
health information available directly to consumers. To seize the opportunity
afforded by these changes, the National Cancer Institute (NCI) launched the
Health Information National Trends Survey (HINTS). Fielded for the first time
in 2003, the HINTS is a nationally representative, general population survey of non-
institutionalized adults in the United States 18 years and older. This supplement con-
tains a compilation of original research conducted using the data generated by the
first administration of the HINTS telephone interviews. Covering topics in cancer
knowledge, cancer cognition, risk perception, and information seeking, the articles
represent an interdisciplinary view of cancer communication at the turn of the
millennium and offer insight into the road ahead.
Whether anyone knew it at the time, the year 1990 was a watershed moment for can-
cer communication researchers. To begin with, it was the first time that age-adjusted
death rates from cancer begin to decline after a century of disparaging increases in
cancer-related mortality (Ries et al., 1999). Reasons for the turn can be attributed
to a constellation of factors including better detection and treatment options, but
Address correspondence to Bradford W. Hesse, National Cancer Institute, Bethesda,
Maryland, USA. E-mail: firstname.lastname@example.org
Journal of Health Communication, 11:vii–xvi, 2006
Copyright # Taylor & Francis Group, LLC
ISSN: 1081-0730 print=1087-0415 online
much of the decline can be chalked up to the success of cancer control advocacy in
turning the tide on behavioral risk factors (Hiatt & Rimer, 1999). Just two and a half
decades prior to 1990, at the time when the Surgeon General’s report linking smok-
ing to lung cancer was published, 45% of the population smoked and deaths from
lung cancer were reaching all time highs. After two decades of steady health com-
munication efforts, smoking rates in the United States fell to less than 25% of the
adult population (Centers for Disease Control and Prevention, 1997), with a sub-
sequent longer term drop off in lung cancer mortality. On an entirely different front,
1990 was also the year Tim Berners-Lee, a computer scientist at the CERN High
Energy Physics Laboratory in Switzerland, proposed a small project to link documents
through the Internet, a project he called the ‘‘World Wide Web’’ (Gaines, 2002).
Fast forward to 2003, the baseline year for the NCI’s newly minted HINTS.
Congress had just allocated its fifth year of double-digit funding increases to accel-
erate the nation’s fight against cancer (Von Eschenbach, 2004), and public health
progress in cancer prevention and control was continuing. The steady decline in age-
adjusted cancer deaths continued its downward trend with progress influenced heavily
by primary prevention efforts in tobacco and diet; secondary prevention efforts for
Cancer Society, 2006). In laboratories funded by the National Institutes of Health
(NIH), scientists completed mapping the more than three billion base pairs composing
the Human Genome 2 years ahead of schedule. The result was to make an unpre-
cedented amount of common genetic data available to cancer researchers, opening up
an era of tailored medicine (National Human Genome Research Institute, 2003).
The year 2003 also saw the first plateau in a geometric escalation of public Inter-
net use, with almost two thirds of the U.S. population (63%) going online (Hesse
et al., 2005). Data from the baseline administration of the HINTS revealed that
roughly 45% of the general population reported looking proactively for cancer infor-
mation at some point in their lives, and within that group the majority reported
going to the Internet first, prior to going to their physicians, family, friends, or other
media (Arora et al., 2006). From a study of on-line search engines, ‘‘cancer’’
appeared as the third most popular health term searched on the web, preceded only
by the terms ‘‘depression’’ and ‘‘allergies’’ (Rice, 2001).
An Extraordinary Opportunity in Cancer Communication Research
This decade-long series of converging forces heralded by events set in motion in 1990
led to the identification of an ‘‘extraordinary opportunity in cancer communication’’
by the NCI in its annual budget to Congress in 1999. The opportunity was announced
at a time in which the entire institute was rethinking its strategic approach to cancer
control. Having recognized that 50%–75% of cancer deaths could be attributable to
behavioral risk factors, the newly formed Division of Cancer Control and Population
Sciences was positioning itself to seize the public health opportunity afforded by
achieving behaviorally oriented goals. Investments in the science of cancer communi-
cation were identified as an integral part of that effort (Hiatt & Rimer, 1999).
The extraordinary opportunity also came at a time in which the very context of
health communication was changing rapidly. Cable television had broken the hold of
the ‘‘Big Three’’ networks, with a proliferation of new channels and program choices
fragmenting the media environment. Television networks, newspapers, and period-
icals began narrowing definitions of target audiences, with specialty channels and
viii B. W. Hesse et al.
targeted publications becoming more common. The introduction of interactive me-
dia enabled ‘‘one to one,’’ ‘‘one to many,’’ and ‘‘many to many’’ interactions in both
synchronous (real) and asynchronous (delayed) time. As video, audio, text, and elec-
tronic ordering came on-line, the new communication environment began enabling
innovative types of interactions with both positive and negative consequences (Vis-
The Importance of Health Information
Although the benefits and drawbacks of the new communication environment for
health were not yet fully known, the stakes for harnessing the impact of these new
capabilities were rising. In October 2001, in the wake of public concern over bioter-
rorism, government website administrators were grappling with the fact that public
traffic to their websites appeared to be doubling and tripling in volume. During the
traffic at the Centers of Disease Control and Prevention’s website (Chan, Bumatay,
& Pileggi, 2001). The ‘‘push’’ of news stories on anthrax from the mainstream media
was creating an equally strong ‘‘pull’’ from the public for news from on-line health
information sources (Kittler, Hobbs, Volk, Kreps, & Bates, 2004).
In the bigger scheme of things, the surge of web traffic after the terrorist attacks
of September 11, 2002, should not have been surprising. Because the Internet tech-
nologies break down geographic (Hesse, Sproull, Kiesler, & Walsh, 1993), temporal
(Hesse, Werner, & Altman, 1988), and even social barriers (Sproull & Kiesler, 1991),
health information consumers were already learning how to bypass traditional gate-
keepers to access health information directly from the source, a trend referred to by
new media researchers as ‘‘disintermediation’’ (Wallace, 2004). Almost unnoticed by
many public health administrators, traffic patterns at government websites already
had begun shifting in the late 1990s to a point at which the preponderance of visitors
was not made up of traditional constituencies, but of public information seekers
(Hert, Liddy, Shneiderman, & Marchionini, 2003). The trend was driving millions
of visitors to the NCI’s ‘‘Cancer.gov’’ and similar websites each year. Visitors to
government and academic websites were looking for credible information on cancer
to steer ‘‘vital health decisions’’ for themselves and for their loved ones (Fox & Fal-
lows, 2003; Fox & Rainie, 2002).
This shift to a more proactive and questioning public was occurring at the same
time that the story behind cancer-related health findings in the media was becoming
more complex and nuanced. In 1971, when the national cancer program was forma-
lized through passage of Public Law 92-218, conventional wisdom was that the ‘‘war
against cancer’’ would be won by finding a single ‘‘cure’’ for a singular disease. By
the 1990s it was clear that cancer was not a single disease, but a complex family of
diseases with differing pathways of risk and varying implications for treatment (Von
Eschenbach, 2005). Victory in the war against cancer would have to occur on mul-
tiple fronts, with a greater emphasis on prevention and early detection, and in detect-
ing opportunities for intervention through a personalized understanding of genetic
risk (NCI, 1999).
To meet the challenge of that complexity, cancer researchers began harnessing
the power of large-scale informatics infrastructures in medical, biomedical, and con-
sumer domains (Buetow, 2005; Hesse, 2005). Priorities from the U.S. Department of
Health and Human Services reinforced the role of information technology as the
means for accelerating progress toward a health care system in the United States that
is safe, effective (i.e., evidence-based), patient centered, timely, efficient, and equi-
table (Berwick, 2002; Brailer, 2005; Featheringham, 2004; Institute of Medicine
(U.S.) Committee on Quality of Health Care in America., 2001). Communication
researchers began experimenting with mass customization engines that would begin
tailoring the timely delivery of health information to consumers in ways calculated
to empower patients and conserve costs while elevating national gains in disease pre-
vention (Abrams, Mills, & Bulger, 1999; Emmons et al., 2004; Kreuter et al., 2004;
Kreuter & Wray, 2003; Rimer & Glassman, 1999). More work would be needed to
monitor the public’s use of these health information technologies, and to rethink
cancer communication in the information age (Neuhauser & Kreps, 2003).
Origins of the Health Information National Trends Survey
Given the rising importance of health information to enable population goals, the NCI
initiatedcreationof the HINTSinJune 2001.Suggestions for the biennialtrendssurvey
came from a 1997 workshop of acknowledged leaders in the area of risk communi-
cation. Attendees at the workshop recommended a nationally representative surveil-
lance mechanism to monitor the influence of a changing communication
environment on cancer-related knowledge, perceptions, attitudes, and behaviors. The
storyoftechnologyattheturnof the millennium,workshopattendeesargued,isastory
of broad, large-scale change—much of it unanticipated. A monitoring system would
help keep track of the change from the public’s perspective and would help the NCI
adjust programmatic inputs to increase effectiveness for population health outcomes.
In a previous issue of the Journal of Health Communication, Nelson et al. (2004)
offered a foundational description of the assumptions underlying the program and
the rigor with which the first survey was launched. The article laid out the frame-
work for the survey and described the various theoretical foundations that had been
tapped to populate items within the baseline instrument. It also described a dissemi-
nation plan that built on assumptions of open access to the data, and informatics
support for linking individual scientists to national findings.
In the same issue, two commentators (Freimuth, 2004; Yach, 2004) offered their
perspectives on what the significance of the program might be for cancer communi-
cation researchers, along with the challenges the program might face. Both found
value in the content of the survey, recognizing that its theory-driven approach would
provide a population-level complement to work being done by grant-funded scien-
tists. They also reinforced the values of open access, collaboration, transparency,
and interdisciplinarity in making data from the nationally funded survey available
and accessible to the broader scientific community.
Organization of the Supplement
It is in this spirit of scientific openness that we are pleased to offer the following com-
pilation of published work from the HINTS baseline. Origins of the supplement can
be traced back to February 16, 2004, when the NCI made the first comprehensive
data set of nationally collected survey data available to the public through the
HINTS website (http://hints.cancer.gov). It was not long after the initial public
release that researchers outside of the NIH joined scientists from within the agency
to explore, parse, and analyze the national data. A year later, in January 2005, the
x B. W. Hesse et al.
NCI hosted a research conference to bring this vanguard group of scientists together.
Following that conference, NCI program managers released a call for papers to
bring the best examples of those analyses into a single volume represented by the
work in this supplement. Although space did not permit publication of all the
provocative and interesting papers submitted to us, we are grateful for the generous
contributions of all who responded to the call.
Organization of the supplement reflects the thematic focus of questions under-
lying construction of the first HINTS instrument. Ultimately, the purpose of the
HINTS program is to generate the research needed to improve the prevalence of
evidence-based health behaviors across all segments of the population. To that end,
the instrument isanchored on a set of common data elementslinked from othernation-
ally funded surveillance mechanisms on behaviors and their outcomes (e.g., the
National Health Interview Survey, the Behavioral Risk Factor Surveillance System).
The distinct contribution of the HINTS program, however, is to provide com-
munication scientists with measures of intervening process variables (knowledge, atti-
tudes and beliefs, affect, mediating behaviors) collected concurrently with indices of
change in the health communication environment. Within each vector of the measure-
ment framework there is room for variation according to priorities across administra-
tions of the instrument. Areas of emphasis from the baseline included foci on cancer
knowledge, cancer cognition and risk perception, and cancer information seeking.
We have organized the articles in the supplement to reflect those areas of emphasis.
Under the topic of cancer knowledge, we include two papers that deal directly with
assessments of what people already have learned or believe regarding cancer control
and prevention. Viswanath and his colleagues begin the discussion with a caveat that
knowledge may not be evenly distributed throughout the population. In an age in
which ‘‘information is power,’’ knowledge gaps can emerge that lead to serious omis-
sions of protective behavior among disadvantaged segments. These authors’ analyses
of the HINTS baseline data suggest that significant gaps in knowledge regarding
tobacco and sun exposure may be directly related to socioeconomic status, with edu-
cation and income playing significant roles. The data also suggest that focused use of
media might attenuate the effect, giving health disparities planners a target for public
Ford and her colleagues used the HINTS baseline to evaluate the prevalence of
colorectal screening knowledge among adults 45 years and older. Communication
efforts have been launched to disseminate the message that colorectal screening
can save lives, especially among those with a familial predisposition toward the dis-
ease. From their analyses of the HINTS data, these researchers found that awareness
of colorectal screening guidelines in the general population appears to vary by age,
marriage status, and routine access to physicians. Communication efforts would be
needed to enhance awareness within these groups, they argued.
Cancer Cognition and Risk Perception
The second group of articles investigates the roles risk perception, affect, and health
cognition play in interpreting messages related to cancer. Zajac and her colleagues
documented evidence that perceptions of absolute risk (e.g., ‘‘What is the likelihood
HINTS Baseline xi
that you will get cancer?’’) and perceptions of relative risk (e.g., ‘‘How does your risk
compare to someone similar to you?’’) can be differentially related to worry when
tracked in a large sample across several different types of cancer. The study’s find-
ings reinforce conclusions from smaller sample studies, and add converging evidence
to the data published from localized laboratory and field evaluations.
Han and his coauthors explored how the concept of ‘‘ambiguity’’ might account
for documented uncertainties about cancer prevention recommendations. The article
offers a meticulous tie to the decision support literature in order to develop hypoth-
eses for relationships between perceptions of ambiguity and perceptions of cancer
preventability, cancer risk, and cancer worry. The relationships specified by this a
priori link to the literature are largely borne out by the HINTS population-level
data, suggesting a need to resolve the communication issues surrounding health
action when findings or recommendations are unclear.
Hay and her associates turned their attention to examining patterns of risk per-
ception related to colorectal cancer among respondents in the HINTS sample who
were over 45 years of age and who had no prior colon cancer history. Not unpredic-
tably, these authors found that most respondents generally did not perceive them-
selves as being at high risk for colon cancer. In a more surprising vein, these
researchers found a relationship between age and perceptions of comparative risk
for colon cancer such that those who were over age 65 reported feeling at less risk
than those in younger groups. The authors offer a compelling explanation for why
this degree of ‘‘unrealistic optimism’’ increases with age, and they offer recommenda-
tions for how to deal with the problem in cancer communication activities.
Dillard and her colleagues investigate the cognitive correlates of unrealistic opti-
mism to cancer myths and risk behaviors. Honing in on the area of smoking, an
arena in which perceptions of unrealistic optimism have been observed to drive risky
behavior, these researchers found that smokers in the HINTS sample who underes-
timated their risk for lung cancer were more likely to endorse lung cancer myths
(e.g., smoking a few years will not lead to risk for lung cancer). More importantly,
these same respondents were less likely to plan on quitting smoking, illustrating a
destructive link between internal cognitions and behavioral intentions as measured
throughout the population.
The last article in the section explores cognitive response patterns with respect to
the area of fruit and vegetable consumption. The NCI, along with other prominent
health agencies, has endorsed a goal of eating from five to nine servings of fruits or
vegetables a day. Cerully and her colleagues report the unfortunate fact that 88% of
the population appeared to be nonadherent to these recommendations. After divid-
ing the HINTS sample into two groups—those who spontaneously identified ‘‘fruit
and vegetable consumption’’ as a strategy for reducing risk and those who did not—
these authors found that people who did not identify fruit and vegetable consump-
tion as a protective strategy trusted cancer information sources less than their
cognizant counterparts. Communication efforts should be revitalized, the authors
argued, to create diet messages that are memorable and that come from sources that
are truly perceived as being credible.
Cancer Information Seeking and Communication
In the last section, we move away from the surveillance of cancer knowledge,
cognition, and affect, to investigate the more active processes associated with cancer
xii B. W. Hesse et al.
information scanning and seeking. Information seeking has been a topic of focused
attention in the past (Freimuth, Stein, & Kean, 1989; Johnson, 1997), but has relied
primarily on interviews with self-selected samples of callers to cancer information
help lines. The HINTS provides an opportunity to update these earlier findings in
an era of broad information access (Freimuth, 2004).
Squiers and her coauthors begin the section with an examination of awareness of
the NCI’s own Cancer Information Services (CIS). Results showed that awareness
of the CIS was generally eclipsed by awareness of other national organizations,
including the American Cancer Society and the NIH. Results also revealed an inter-
esting trend reversal based on minority=ethnic group, education, and income consist-
ent with dissemination efforts by the CIS partnership program.
Rutten and her colleagues switch their emphasis to quality of interactions as
reported by the public with their health care providers. These authors find that
ratings of communication quality do not vary by traditional sociodemographic vari-
ables, but by access to health care (insurance status, primary care physician) and by
self-reports of health status and depressive symptomology. Similar to the Viswanath
et al., Rutten and her colleagues caution that lack of access to quality health infor-
mation may contribute substantively to issues of health disparities. Rutten also pro-
vided a brief analysis of the cancer topics reported in an open-ended question from
the HINTS interview in a brief research note. The note provides a valuable glimpse
at the public’s information needs related to cancer.
Three papers investigate the relationship between the process of attending
to cancer information, either passively or actively, and reports of adherence to
evidence-based health behaviors. Shim et al. begin the section by making an impor-
tant conceptual distinction between information seeking and information scanning.
Seeking, they reason, can be considered to be a relatively active process of looking
for cancer information when a specific information need arises, while scanning
may be considered to be a more passive state of vigilance to the health information
environment. Using the HINTS baseline data, they partition respondents into
groups of high versus low scanning and seeking versus nonseeking. From their
analyses, the authors found that both scanning and seeking were significantly related
to increased knowledge about cancer, engagement in preventive health behaviors,
and colorectal and prostate cancer screening. Only scanning was related to reports
of recent mammography, suggesting a less engaged degree of vigilance for this
particular type of screening test.
Nguyen and Bellamy investigated the hypothesis that significant cultural differ-
ences may exist between Asian Americans and Whites in information-seeking
preferences and experiences. In general, they found that Asian Americans differed
significantly from Whites in awareness of cancer information resources, the impor-
tance of primary and secondary prevention strategies, and personal risk, again rein-
forcing concerns over knowledge gaps for this growing minority group. For the most
part, preferences were similar between Asian Americans and Whites for information
sources, with both groups expressing high trust in physicians, though the Asian
American group expressed preferences for print material as a channel for cancer
Ling and colleagues finish this section by looking for associations between
information-seeking preferences and adherence to recommendations for colorectal
cancer screening. The researchers focused their analytic efforts on a cohort of
respondents 50 years or older. That cohort generally reported preferences for getting
information relevant to screening through personalized materials, directly from their
physicians, or from published materials. Trust in health information from their phy-
sicians was a factor most associated with being up to date on recommended screen-
ings, a finding in line with previous literature highlighting the role of the physician in
encouraging routine screening tests (Finney Rutten, Meissner, Breen, Vernon, &
Rimer, 2005; Meissner et al., 1998; Meissner, Potosky, & Convissor, 1992). The
authors reinforce the importance of the physician in keeping patients adherent with
screening recommendations, but also point to the emergence of the Internet as a tool
for apprising the public.
By developing a nationally representative survey to monitor the public’s use of
cancer-related health information, and by presenting data from the first administra-
tion of that survey on-line to cancer communication scientists, the NCI sought to
catalyze an evolution of resources in the fight against cancer. The evolution is not
without its caveats. The HINTS is only one tool in the collective armamentarium
of methodological resources that individual scientists bring with them to solve the
puzzles of cancer control and prevention. The contributing authors to this sup-
plement all have recognized that strict inferences of causality are not possible with
cross-sectional data. For insight into causality, individual researchers must turn back
to the laboratory or to quasi-experimental designs to test the hypotheses generated by
their foray into national data. Nor should the HINTS program, with resources for
sampling slightly fewer than 7,000 adults on each administration, be made to answer
the surveillance questions better addressed by larger, more costly national surveys.
Nevertheless, the contributions of HINTS as a linking pin between the local
scope and control of the laboratory on the one hand, and the broad scope and gen-
eralizability of a nationally representative sample on the other, cannot be overstated.
For science to address the seemingly intractable problems of the twenty-first century,
it must elevate itself beyond parochial self-interests (Sellers, Caporaso, Lapidus,
Petersen, & Trent, 2006). It must become transdisciplinary, bringing the converging
methods of complementary sciences to solve novel problems in novel ways (Mitchell,
2005; Stokols, Harvey, Gress, Fuqua, & Phillips, 2005). Science also must become
telescopic, spanning levels of analysis from the psychological considerations of the
individual to the ecological considerations of cultivating one’s health in a fragmented
information environment (Smith, Orleans, & Jenkins, 2004). We hope that this
supplement initiates a step down that evolutionary path.
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