The National Cancer Institute's cancer information service: a new generation of service and research to the nation

The National Cancer Institute (NCI), the nation's leading agency for cancer information and research, mandated by the U.S. Congress to provide accurate, up-to-date information about cancer to all segments of the U.S. population, established the Cancer Information Service (CIS) on July 1, 1975. Using a two-pronged approach, the telephone information service and education programs for the public and health professionals, the CIS was designed to maximize its reach. In 1982, the CIS implemented three tools: the Call Record Form to record data about each call to the service, a national user survey, and a system of national test calls. These resulted in a rich data source and an infrastructure that allowed collaborative health communications research with the CIS to emerge later in the decade. As the CIS embarks on a new generation of service to the nation, it is now characterized by three vital components that advance the NCI's overall mission of cancer prevention and control: a Partnership Program, Multichannel Contact Centers, and a Health Communications Research Program.     

Clinical trial awareness among racial/ethnic minorities in HINTS 2007: sociodemographic, attitudinal, and knowledge correlates

The purpose of this study was (1) to examine the association of race/ethnicity on clinical trial awareness, controlling for several sociodemographic, attitudinal, and knowledge variables, and (2) to inform future communication campaigns to increase clinical trial awareness and participation. Secondary analysis was conducted among 6,754 Hispanic, Black, and White adult respondents to the National Cancer Institute's 2007 Health Information National Trends Survey (HINTS). The dependent variable was awareness of clinical trials. Logistic regression was used to examine possible correlates of clinical trial awareness including sociodemographics, trust of sources of health information, beliefs about safety of health information, family/personal history of cancer, health seeking information, and awareness of three health agencies. Compared with Whites, Blacks and Hispanics were significantly less likely to have heard of a clinical trial. Other significant correlates of clinical trial awareness included education, income, belief that health information is safely guarded, family history of cancer, awareness of the Centers for Disease control, trust of health information from the Internet and charitable organizations, and distrust of health information from religious institutions. Blacks and Hispanics are significantly less aware of clinical trials. Campaigns that exploit unique beliefs and delivery channels for racial/ethnic subgroups should be considered.     

Health disparities in awareness of physical activity and cancer prevention: findings from the National Cancer Institute's 2007 Health Information National Trends Survey (HINTS)

This national study examines differences between racial/ethnic groups on awareness of physical activity and reduced cancer risk and explores correlates of awareness including trust, demographic, and health characteristics within racial/ethnic groups. The 2007 Health Information and National Trends Survey (HINTS) provided data for this study. After exclusions, 6,809 adults were included in analyses. Awareness of physical activity in reduced cancer risk was the main outcome. Logistic regression models tested relationships. Non-Hispanic Blacks had a 0.71 (0.54,0.93) lower odds of being aware of physical activity in reduced cancer risk than non-Hispanic Whites. Current attempts to lose weight were associated with greater odds for awareness among non-Hispanic Blacks and Hispanics (p?相似文献   

The CIS model for collaborative research in health communications: a brief retrospective from the current generation of research

The Cancer Information Service (CIS) of the National Cancer Institute (NCI) is the premiere organization for providing cancer information to the nation. The CIS provides a stellar example of how a service organization dedicated to health communications also can serve as a laboratory for research. This journey by the CIS into health communication research is described briefly, along with the current generation of research summarized in this issue of the Journal of Health Communication (JHC). The CIS model for collaborative research is presented as an exemplar that other service organizations might embrace as a strategic tool for quality improvement in health communications.     

A process evaluation of the National Cancer Institute's Data-based Intervention Research program: a study of organizational capacity building

This paper reports on a qualitative process evaluation of the Data-based Intervention Research (DBIR) program, that was funded by the National Cancer Institute (NCI) and operated in 21 states and the District of Columbia. The goal of DBIR was to build a foundation within state health agencies to ensure the translation of cancer control science into practice. NCI's objective reflected the readiness of cancer control research for public health application, the paucity of cancer control activity within public health settings and the recognition that state health agencies could play a critical role in the effective transfer of research results into public health practice. The qualitative process evaluation reported in this paper is based on one case study of four DBIR programs. The present study indicates that the four state health agencies executed the DBIR program with fidelity. Also, the four states offered a balanced assessment of NCI's role in enabling the state agency operation of DBIR, providing numerous citations illustrating how NCI successfully facilitated organizational capacity as compared to fewer mentions of ways NCI was less than successful. Thus, in funding the DBIR model, NCI was successful in raising state health agency capacity to implement cancer prevention and control programming. Implications for capacity building in state health departments are discussed.     

Cancer patients' information needs across the cancer care continuum: evidence from the cancer information service

This study examines the information needs of cancer patients who contacted the National Cancer Institute's (NCI's) Cancer Information Service (CIS) via a toll-free telephone number. Records from 19,030 calls received from cancer patients between September 2002 and August 2003 were analyzed to determine differences in subjects of interaction (main topics of inquiry and discussion) for subgroups of patients based on demographic characteristics and stage along the cancer care continuum (pretreatment, in-treatment, post-treatment, recurrence). Females were more likely than males to inquire about cancer screening/diagnosis, support services, psychosocial issues, and general cancer site information, but they were less likely to seek specific cancer treatment information. Older patients were more likely than younger patients to seek specific treatment information, but they were less interested in support services, psychosocial issues, and prevention/risk factors. Compared with White callers, Hispanics and most minorities were more likely to seek support service information, and African Americans were more likely to have questions related to psychosocial issues. Compared with patients in treatment, patients in recurrence were more likely to seek specific treatment information; patients not in treatment were more likely to seek medical referral information; and patients in post-treatment were more likely to seek screening/diagnosis and prevention/risk factor information. Findings will help the CIS and other cancer-focused organizations address the distinct information needs of different subsets of cancer patients.     

The National Cancer Institute's CancerNet

Abstract

The International Cancer Information Center (ICIC) of the National Cancer Institute (NCI) provides up-to-date, accurate cancer information through CancerNet, an online service. CancerNet is comprised of a comprehensive knowledge base that includes peer-reviewed statements from Physician Data Query (PDQ); fact sheets, publications, and NCI news; detailed information about ongoing clinical trials; selected information from the Journal of the National Cancer Institute; and CANCERLIT topic searches. This article discusses the role CancerNet plays in providing timely and accurate cancer information to health professionals and consumers.     

Cancer prevention counseling on telephone helplines.

Since 1983, the National Cancer Institute (NCI) has collected data by means of its Cancer Information Service (CIS), a toll-free telephone helpline for health care professionals and members of the public who have questions about cancer treatment, diagnosis, and prevention. These data reveal information about the characteristics of callers and their questions and about how inquiries reflect mass media promotions and secular trends. A request for a publication is the most common type of inquiry, followed by information about specific cancer sites, smoking prevention and cessation, other types of prevention, cancer treatment, cancer symptoms, referrals to physicians, NCI clinical trials, hospital and clinic-based screening programs, and general counseling or coping. Breast cancer is the most common cancer of interest, followed by respiratory system cancers, colon and prostate cancers, leukemia, melanoma, nonHodgkin's lymphoma, cervical cancer, general or unspecified skin cancer, and ovarian cancer. Responding to these other caller inquiries, CIS counselors may proactively guide callers to a desirable goal, such as screening mammography. Protocols have been developed to assist counselors' proactive efforts, and preliminary results are beginning to support this approach. The findings gathered in this study underscore the health education potential of telephone helplines and point to the need for controlled evaluation research on the effectiveness of proactive counselor advice.     

Identifying sedentary subgroups: the National Cancer Institute's Health Information National Trends Survey

BACKGROUND: Developing effective interventions for the 24% to 28% of U.S. adults who are sedentary requires a better understanding of the factors related to sedentary lifestyles as well as the communication channels to reach various subgroups. This study identified key sociodemographic and health communication characteristics of various subgroups with high rates of inactivity using signal detection methodology. METHODS: The sample from the nationally representative Health Information National Trends Survey 2003 (n=6369) was randomly split into two samples. Exploratory analyses (conducted 2004 and 2005) were employed on the first sample to identify various subgroups, and the stability of inactivity rates in those subgroups was examined in the second sample. RESULTS: Eight subgroups with varying levels of inactivity were identified. Three subgroups had inactivity levels of 40% or higher, while the lowest subgroup had a level of less than 15%. The highest inactivity subgroup consisted of individuals with at least some college education who were in fair/poor health and who watched 4 or more hours of television per day. The second-highest inactivity subgroup was composed of those without a college education who tended not to use or attend to many communication channels. The third highest inactive subgroup consisted of those without a college education who read the newspaper and were obese. Levels of inactivity in the second independent sample subgroups were not significantly different from those found in the exploratory sample. CONCLUSIONS: This study identified empirically based, physically inactive subgroups that differed on sociodemographic and health communication characteristics. This information should be useful in creating future evidence-based, targeted, and tailored intervention strategies.     

Peer Reviewed: Awareness of Racial and Socioeconomic Health Disparities in the United States: The National Opinion Survey on Health and Health Disparities, 2008-2009

Introduction

Recent initiatives aim to improve public awareness of health disparities. However, little research has actually documented the US public''s awareness of racial/ethnic and socioeconomic health disparities. We sought to determine 1) whether the US public is aware of racial, educational, and income disparities in health, 2) whether awareness differs across these disparity domains, and 3) what respondent characteristics are associated with awareness of racial, educational, and income disparities in health.

Methods

We conducted the National Opinion Survey on Health and Health Disparities with 2,791 US adults. We asked respondents to answer questions about disparities in health between 1 of several pairs of population subgroups: African Americans versus whites, non–high school graduates versus high school graduates, high school graduates versus college graduates, the poor versus the middle class, or the middle class versus the rich. We used χ² tests and logistic regression to compare correlates of respondents'' awareness of disparities across the different pairs of population subgroups.

Results

Most respondents were aware of health disparities between the poor and middle class (73%); fewer were aware of health disparities between African Americans and whites (46%). Although respondents recognized that education is associated with many positive life outcomes, they were less aware of the link between education and health. Respondents who were younger, less educated, lower-income, healthier, or politically conservative were less likely to be aware of health disparities.

Conclusion

Public awareness of disparities in health differs depending on both the type of disparity and the characteristics of the individual respondent.     

A case study in dissemination: lessons learned from a pilot study involving the National Cancer Institute's Cancer Information Service

The Cancer Information Service Research Consortium (CISRC) was funded by the National Cancer Institute to disseminate as a pilot study a longitudinally tailored print intervention to promote the 5 A Day for Better Health program among callers to the National Cancer Institute's Cancer Information Service (CIS). Using a one-group (intervention-only) study design, 1,022 eligible CIS callers were enrolled to receive the intervention consisting of four mailings of tailored print materials over a 3-month period. Program evaluation focused on process and implementation evaluation, including adherence to the baseline interviews by CIS information specialists based on live-call monitoring (n = 55 eligible callers), and the timeliness of the intervention mailouts (4,088 scheduled mailouts). Adherence to the baseline interviews by CIS information specialists was extremely high, exceeding 90% for all indicators of quality control. Of the 4,088 intervention mailings, 75% occurred on or before the target date, while 95% occurred within 21 days of the target date. All delays in the scheduled mailouts occurred in the first mailing, due to changes made in the production process (batch printing of all tailored print materials at baseline). This change required additional system upgrades and more intensive and time-consuming quality control than originally anticipated, which was exacerbated by the faster-than-expected accrual of eligible participants. Based on this pilot study, the CIS is now positioned for widespread dissemination of the 5 A Day tailored print intervention. Several key lessons learned are also identified to facilitate the transition from research to dissemination.     

Increasing the accuracy of perceived breast cancer risk: results from a randomized trial with Cancer Information Service callers

BACKGROUND: Results are reported from a randomized trial designed to increase the accuracy of perceived breast cancer risk among callers to the NCI's Cancer Information Service (CIS) (n = 392). METHODS: CIS callers assigned to the intervention group (n = 200) received a brief educational intervention and an estimate of breast cancer risk over the telephone at the end of usual service. Follow-up interviews were completed by telephone at 1 month (n = 367). RESULTS: On average, women overestimated their risk by 25 percentage points. Eighty percent of the respondents rated their risk of breast cancer higher than did the assessment tool. Women rated their risk higher if they were under age 50 (P = 0.025) or had a first-degree family history of breast cancer (P = 0.0001), and rated their risk lower if they were Latina (P = 0.050) or Asian/other race/ethnicity (P = 0.013). Women with a first-degree family history of breast cancer in the intervention group significantly reduced their risk overestimate compared to those in the control group (-12.5 vs. 2.8 percentage points, P = 0.006). CONCLUSIONS: This intervention was unique because it was delivered in an ongoing service setting. It should be further tested in diverse populations.     

Exploring e-Health usage and interest among cancer information service users: the need for personalized interactions and multiple channels remains

Since searching for health information is among the most popular uses of the Internet, we analyzed a survey of 6,019 callers to the National Cancer Institute's (NCI's) Cancer Information Service (CIS) to assess Internet usage and interest in technologies to access health and cancer information. Findings suggest that about 40% of CIS callers used the Internet to obtain cancer information and, of these, only about 20% found all the information they sought. Nearly 33% of Internet users called the CIS to discuss information found on the Internet; most (>90%) reported that the CIS was helpful. Those who sought cancer information on the Internet were more likely to call the CIS about this information if they found all or most of the information they were seeking, compared with those who found some or little of the information. New communication services endorsed by most CIS callers included e-mails from an information specialist and telephone support from the CIS while on the Internet. The survey results indicate the importance of multiple access points, both traditional and technology based, and that there is still a need for more traditional, personalized forms of health communication. A crucial question is how best to harness and integrate these new technologies within the current generation of mediated health information systems.     

What Works to Prevent Adolescent Smoking? A Systematic Review of the National Cancer Institute's Research‐Tested Intervention Programs

BACKGROUND: Cigarette use remains the leading preventable cause of death in the United States. Although school is an ideal setting for antismoking interventions, school-based programs have not been successful in the long term. The purpose of this study was to explore characteristics of programs deemed to be successful short-term Research-Tested Intervention Programs (RTIPs) by the National Cancer Institute (NCI).
METHODS: To identify adolescent smoking prevention programs, 2 independently working researchers applied specified selection criteria to all programs in the NCI's RTIP database. Selected programs were abstracted using a structured form for general information, participants, interventions, outcomes, and quality. Extracted data were then assessed for common themes and contrasts in each category.
RESULTS: As of June 2008, 18 studies met the NCI's standards for RTIPs preventing smoking among adolescents. After selection criteria were applied, only 5 programs remained. Each independently working researcher arrived at the same pool of programs. In chronological order according to date of publication of outcomes evaluation, the 5 programs ultimately included were Project Towards No Tobacco Use, Pathways to Health, Native FACETS, Kentucky Adolescent Tobacco Prevention Project, and Sembrando Salud. The majority of these programs were targeted toward a particular sociodemographic group (eg, American Indians, Hispanic migrant communities).
CONCLUSIONS: New school-based programs are needed to address current issues in tobacco control. To improve chances of success, these programs may wish to target certain specific high-risk demographic groups, use professional health educators and/or trained community members, and build in methods of updating material.     

Facilitating informed decision making about breast cancer risk and genetic counseling among women calling the NCI's Cancer Information Service

Despite increased interest among the public in breast cancer genetic risk and genetic testing, there are limited services to help women make informed decisions about genetic testing. This study, conducted with female callers (N = 279) to the National Cancer Institute's (NCI's) Atlantic Region Cancer Information Service (CIS), developed and evaluated a theory-based, educational intervention designed to increase callers' understanding of the following: (a) the kinds of information required to determine inherited risk; (b) their own personal family history of cancer; and (c) the benefits and limitations of genetic testing. Callers requesting information about breast/ovarian cancer risk, risk assessment services, and genetic testing were randomized to either: (1) standard care or (2) an educational intervention. Results show that the educational intervention reduced intention to obtain genetic testing among women at average risk and increased intention among high-risk women at 6 months. In addition, high monitors, who typically attend to and seek information, demonstrated greater increases in knowledge and perceived risk over the 6-month interval than low monitors, who typically are distracted from information. These findings suggest that theoretically designed interventions can be effective in helping women understand their cancer risk and appropriate risk assessment options and can be implemented successfully within a service program like the CIS.     

Cancer knowledge and disparities in the information age

Increasing information flow often leads to widening gaps in knowledge between different socioeconomic status (SES) groups as higher SES groups are more likely to acquire this new information at a faster rate than lower SES groups. These gaps in knowledge may offer a partial but robust explanation for differential risk behaviors and health disparities between different social groups. Drawing on the Health Information National Trends Survey (HINTS 2003), a national survey of communication behaviors conducted by the National Cancer Institute (NCI), we examine the relationship between publicity and knowledge gaps on two cancer topics that received different levels of publicity: knowledge about tobacco and sun exposure and their respective links to cancer. Analyses of the HINTS 2003 data suggest that differential knowledge levels of causes of cancer between SES groups are one potential explanation of cancer disparities that have been extensively reported in the literature. It is evident that high income and high education are associated with awareness about causes of major cancers such as lung and skin, and may allow people to protect themselves and minimize their risks. The data also show that heavier media attention could attenuate the knowledge gaps though moderate publicity or lack of news coverage may actually widen them. Last, the findings in this article suggest that it is necessary to take into account the SES variation within different racial and ethnic groups rather than mask them by treating the groups as one.     

Public health approaches to tobacco use prevention and cessation in the U.S.

Tobacco has a long history of use in the U.S., and its serious health effects have been well-documented during the past half century, U.S. efforts to control tobacco use and tobacco-related morbidity and mortality have been reasonably successful over the past 25 years, during which time there has been a 34 percent reduction in adult smoking. Nevertheless, tobacco use remains a significant public health problem in the U.S., with more than 430,000 tobacco-related deaths per year and over one-fourth of the population continuing to smoke. Many organizations are involved in tobacco use control activities, the most broadly focused of which is the National Cancer Institute (NCI). As an example of the type of program needed to address the problem of tobacco use on a national scale, the NCI's public health research plan and activities are described and its emphasis on a data-based decision matrix in its approach to tobacco and cancer control research and applications of research is discussed. Finally, future approaches to tobacco use control in the U.S. are suggested.     

Cancer Information Seeking and Cancer-Related Health Outcomes: A Scoping Review of the Health Information National Trends Survey Literature

Cancer is a leading cause of death among adults in the United States. Only 54% of U.S. adults reported seeking cancer information in 2014. Cancer information seeking has been positively associated with cancer-related health outcomes such as screening adherence. We conducted a scoping review of studies that used data from the Health Information National Trends Survey (HINTS) in order to examine cancer information seeking in depth and the relationship between cancer information seeking and cancer-related health outcomes. We searched five databases and the HINTS website. The search yielded a total of 274 article titles. After review of 114 de-duplicated titles, 66 abstracts, and 50 articles, 22 studies met inclusion criteria. Cancer information seeking was the outcome in only four studies. The other 18 studies focused on a cancer-related health outcome. Cancer beliefs, health knowledge, and information seeking experience were positive predictors of cancer information seeking. Cancer-related awareness, knowledge, beliefs, preventive behaviors, and screening adherence were higher among cancer information seekers. Results from this review can inform other research study designs and primary data collection focused on specific cancer sites or aimed at populations not represented or underrepresented in the HINTS data (e.g., minority populations, those with lower socioeconomic status).