CIS collects detailed standardized data from clients with approval from the contact center institutional review board and the federal Office of Management and Budget. Since 1998, information specialists have used a proprietary Web-accessible electronic contact record form (ECRF) to document their interactions with clients and to capture client information. Similar ECRFs are used for telephone and LiveHelp inquiries. During the open-ended conversation with the client (verbal for telephone and typed online in real-time for LiveHelp), information specialists complete pertinent text and notes fields, select responses from contextually generated drop-down lists, search extensive NCI databases, and connect to online materials ordering services from the ECRF screens. Any remaining data fields are completed immediately after the end of the call or instant messaging.

Many data are collected passively during the interaction with the client. Information, including type of seeker or client, subject of interaction, type of cancer, CIS response to the caller's inquiry, and resources used are collected from all clients. Information specialists also actively ask all clients how they found out about the CIS, if they had contacted the CIS before, and for their zip code. Additional demographic information, including age, sex, education level, ethnicity and race, household income, sources of health care, and insurance status, is collected on a random sample varying from a routine 25% of clients to 100% periodically for special national or regional promotions and research projects.

Procedures for addressing e-mail inquiries differ from LiveHelp and telephone inquiries. A draft response is prepared for each e-mail, which is reviewed internally, and a final response is compiled by using a CIS e-mail template. Once the e-mail response is sent to the client, an ECRF is completed after the fact on the basis of the text of the CIS response. Because of Office of Management and Budget restrictions, demographic data, including sex, race, and education, are not collected from CIS e-mail users.

Accuracy and consistency of ECRFs among information specialists are maintained by a rigorous quality assurance process. Daily samples of audio files, LiveHelp transcripts, and e-mail content are compared with respective ECRF records by internal and national CIS project office supervisors, and regular feedback is provided.

We compared various ECRF demographic data with their equivalents from available national surveys, specifically with US census data for the study period (9) and with more focused information about the demographics of cancer information seekers from 3 successive Health Information National Trend Surveys (HINTS) in 2003, 2005, and 2007. HINTS routinely collects nationally representative data about the American public's use of cancer-related information (10). HINTS collects data by random-digit-dial telephone surveying in all 50 states by using a computer-assisted telephone interview format to accommodate complex skip-patterns. Interviewers follow an on-screen sampling algorithm to select a single sampled person from all adults aged 18 years or older in the household. Survey administration averages 30 minutes per respondent. The most recent survey additionally collected equivalent data by mailed printed questionnaire. In the general HINTS framework, specific questions have differed in the 3 surveys to date. In our comparisons, we matched the most recent available HINTS survey questions with their corresponding ECRF and census items from the same period, ideally from 2007 but in some instances from 2005 or 2003.

ECRF data collected at CIS contact centers in New York, Miami, and Seattle are contained in a centralized database at NCI. Data presented here were cleaned and consolidated into an SPSS version 16 (SPSS Inc, Chicago, Illinois) data set for analysis. For calculations of significance, we first tested selected distributions for normality with the Kolmogorov-Smirnoff procedure and then applied the appropriate parametric or nonparametric test as indicated.

The number of telephone calls to CIS decreased significantly from 2003 through 2008, but the increase in new media users was too small to account for the entire decline. This decrease in telephone calls, however, corresponded to the increase in US adults who chose the Internet in general as their preferred source of health information (13). A series of Harris polls in the last 10 years showed a dramatic increase in US adults who were online (from 38% in 1998 to nearly 80% by 2008) and an equally dramatic increase in adults who looked online for health information (from 27% to 66% during the same period) (14). HINTS found that 58% of respondents looked for health or medical information on the Internet for themselves, and 60% had searched for others (10). HINTS also reported that nearly 28% of respondents used the Internet as their preferred source of cancer information, and only 6% chose to contact an information specialist. Pew Internet surveys from 2002 through 2008 consistently showed that 75% to 80% of Internet users looked online for health information (12).

The increasing availability of health information online coincided with the decline in telephone calls to CIS, which suggests a causal connection. The increase in use of CIS's online LiveHelp and e-mail services also followed the same pattern; however, improvements in CIS workforce management and technology may have contributed to increased efficiency of the new services.

As a public service, CIS has never designated funds for self-promotion. Consequently, a lack of awareness of CIS among patients, the public, and health professionals has frustrated the service since its inception. HINTS surveys found that 75% of respondents had heard of NCI, but only 28% had heard of CIS, and only 19% had heard of the CIS 800 telephone number (10,15). When we mapped regional incidence of contacts to CIS for individual years, we found periodic spikes in per capita volume for various states that we could attribute to regional cancer awareness campaigns, media stories, or other events that temporarily stimulated a local swell in cancer inquiries.

We also found a higher rate of contacts from the Washington, DC/Maryland area across all months, independent of awareness campaigns or other events, which suggests that public awareness of CIS is high in that region. Residents of that region may be more aware of the National Institutes of Health in Bethesda, Maryland, which includes the NCI's CIS. Residents may be more likely to turn to the familiar federal resource than are information seekers beyond the metropolitan area.

Since 2003, the demographic profile of the typical CIS client has not changed. Younger age, higher educational attainment, and higher socioeconomic status are positively related to active information seeking (16-18), which is consistent with the makeup of typical (younger, more educated, and more affluent) LiveHelp users. CIS telephone users are also more educated than are comparable populations from national surveys, which may indicate that, unfortunately, only well-informed people access CIS.

LiveHelp users were significantly younger, more educated, and more affluent than were CIS callers. Income is the primary factor in the disparity in use of online services (19-27); in fact, income appears to predict Internet access even more than race and ethnicity do (28). LiveHelp users reported household incomes generally representative of the US population, but CIS callers were less affluent. The literature consistently shows barriers to Internet use for people with less education (13,26,29,30), which is consistent with the fact that substantially more LiveHelp users were college graduates than in the general population.

Several factors may explain the effect of new media on the use of CIS services. Some CIS telephone clients may have switched to LiveHelp or e-mail once they became available, which would partially account for the decline in telephone calls. Another explanation could be that new media attracted a young, affluent, educated clientele who otherwise would not have called CIS, and the numbers of telephone callers may have declined for other reasons. Most likely, a combination of these factors resulted in the decline in telephone inquiries, which indicates a social trend in information seeking — a general turn away from traditional services such as the CIS 800 line and toward the Internet as the first choice for health information.

These data are primarily descriptive and derived from client self-report. Although our quality assurance procedures ensure high reliability of data gathering, those data are subject to the inconsistencies of self-report. Our analysis and discussion lack a theoretical component, but CIS was not driven by theoretical models at its inception. Initially, CIS was established in response to the National Cancer Act, and points of access were added on the basis of feedback from the public.

The fact that most people are not aware of CIS is its biggest challenge. Public organizations such as CIS need to be able to apply funds toward promotional efforts, much in the way the American Cancer Society has successfully done, but this cannot happen without a federal reexamination of policy. Although we have seen a fundamental shift in the last 6 years in the way people seek health information, the telephone remains the medium of choice for contacting CIS. The CIS telephone service provides a haven for older adults and racial and ethnic minorities who are seeking information but may not have access to the Internet.

Some information seekers may prefer the Internet for its anonymity, but many more need the reassurance of interacting with a person. CIS's telephone service has always offered individualized, tailored, flexible relationships with clients who commonly are coping with life-altering medical conditions. First-hand reports indicate that cancer patients and family members value personal rapport with the information specialist and appreciate the accuracy and legitimacy of the information CIS provides (31). In time, LiveHelp instant messaging may become the standard for a real-time online supplement, if not alternative, to health information given over the telephone.