Racial differences in source awareness, trust, selection and information competence among cancer patients who sought cancer information: A preliminary analysis of HINTS 2007
Version of Record online: 18 NOV 2010
Copyright © 2009 American Society for Information Science and Technology
Proceedings of the American Society for Information Science and Technology
Volume 46, Issue 1, pages 1–8, 2009
How to Cite
Kim, K. and Kwon, N. (2009), Racial differences in source awareness, trust, selection and information competence among cancer patients who sought cancer information: A preliminary analysis of HINTS 2007. Proc. Am. Soc. Info. Sci. Tech., 46: 1–8. doi: 10.1002/meet.2009.14504603112
- Issue online: 18 NOV 2010
- Version of Record online: 18 NOV 2010
We report a preliminary analysis of the recent large-scale national survey from the National Cancer Institute, which is our continued effort to highlight the health information seeking behaviors of American public. With the NCI's Health Information National Trends Survey 2005 we have so far (1) revealed a digital health disparity in the use of cancer information sources among the vulnerable populations in our society (Kwon & Kim, in press); and (2) created a profile of e-Patients and compared and contrasted information source use, preference, and information source trust between e-Patients with cancer against other types of cancer information seekers (Kim & Kwon, 2007). In our present study, we expanded our research focus to examine racial differences in cancer information seeking of cancer patients, using HINTS 2007 dataset.
Many has claimed health disparity to be closely associated with race (e.g., Kreps, 2006). Literature on the minority health informs that there are a number of factors contributing to the health disparity. For example, Matthews, Sellergren, Manfredi, and Williams (2002) found that an array of cultural and socioeconomic factors such as limited knowledge and misinformation about cancer, mistrust of the medical community, concerns about privacy, lack of insurance, and religious beliefs play roles in the behavior of African American cancer patients. Spanish-speaking cancer information seekers also have a low confidence in getting cancer information, compared to their English-speaking counterparts (Vanderpool, Kornfeld, Rutten, & Squires, 2009). Office of Minority Health and Health Disparities (Center for Disease Control & Prevention, 2007) also reports that differences in health and health care among different racial groups are due to genetics, environmental factors, discrimination, cultural barriers, and a lack of access to care.
A lack of access to health information, including a lack of online access, may also affect health disparities, and may play an important role in being informed cancer patients. Certainly, some segments of society—often members of socio-demographically underprivileged populations—still lack access to online health information (Kreps, 2006). The use of Internet information is often uniformly low among ethnic minorities as well (e.g, James et al., 2007). Consumer health literature has pointed out “race” as important factor that differentiates the quality of health care that cancer patients receive. Due to unethical application of clinical research, people in minority groups generally have greater distrust in the health research, which further slows the progress of clinical research that can help the minority population. While digital divide appears to be reduced with the increased accessibility to the Internet, researchers argue that it is only on the surface level and disparity still exists in a more subtle way (Kwon & Kim, 2007). This digital divide in e-health information access is predicted to further exacerbate the digital health disparity if proper measures are not taken (Chang, et al., 2004; Chobot, 2004; Wood, et al., 2000). Thus, in this research, we attempt to scrutinize if and how race plays a role in cancer information seeking among cancer patients.
Over the years, LIS researchers and practitioners have studied health information seeking channels, needs, and behaviors of specific ethnic groups (e.g., Spink & Cole, 2001; & Detlefsen, 2004). Yet, most studies examined specific ethnic groups, but few have compared and contrasted health information consumers with different ethnic backgrounds. For example, Detlefsen (2004), in her study on the two vulnerable communities – the elderly and the African Americans, reported that the two groups prefer information from their health care providers and/or from established sources, but both groups do seek consumer health information and are increasingly using the Internet for information searches. Thus, much is unknown about how competent the racial minority cancer patients are in seeking and using health information to make informed decisions. Do the cancer patients with different racial background have different level of trust in selecting sources, and of information competence, and if so, how?
To answer the research question, this study will identify and compare the White and Non-White self-informed cancer patients with respect to the following aspects:
Awareness, trust, and selection of health or medical information sources
We conducted a secondary data analysis using the National Cancer Institute's (NCI) HINTS 2007 data (2009; http://hints.cancer.gov/instrument.jsp). The HINTS is an ongoing cross-sectional survey of the U.S. civilian, non-institutionalized, adult population developed by health communication scholars and staff of the NCI and conducted by the independent company Westat. The survey instrument includes validated measures selected from existing surveys and new items which underwent extensive pre-testing and expert review (NCI, 2003).
HINTS 2007 data were collected from January 2008 through May 2008. A total of 7,674 adult Americans have participated in this national random survey study through (1) a Random Digit Dial telephone survey (n=4,092) and (2) a random sample from a list of addresses from the United States Postal Service administrative records (n=3,582). For our study, we selected cancer patients who are non-Hispanic White, Black/African American, or Hispanic from the total HINTS participants, and combined Black/African American and Hispanic in order to compare and contrast cancer information seeking of White and non-White racial groups. We combined the Black and the Hispanic groups into a non-White group, because the two groups have too small number of cases (32 and 30, respectively, out of the total of 674 cancer patients who sought cancer information) with a good deal of missing values for valid statistical analyses. Such contrast in numbers itself is an indication of racial disproportion in the cancer patients community.
We select socioeconomic, and a set of cancer information seeking and use variables from the HINTS 2007 to answer our research questions.
Filtering Variables (Original HINTS Questions)
- 1Cancer information seeking: Have you ever looked for information about cancer from any source?
- 2Cancer History: Have you ever been diagnosed as having cancer?
- 3Race/Ethnicity : Are you Hispanic or Latino? Which one or more of the following would you say is your race?
- 1Age : What is your age?
- 2Gender : Are you male or female?
- 3Education : What is the highest level of school you completed?
- 4Employment : What is your current occupational status?
- 5Combined annual income : What is your combined annual household income?
- 6Healthcare coverage : Do you have any kind of health care coverage, including health insurance, prepaid plans such as HMOs, or government plans such as Medicare?
- 1Internet use : Do you ever go on-line to access the Internet or World Wide Web, or to send and receive e-mails?
- 2Internet access at home : When you use the Internet athome, do you mainly access it through (telephone modem; cable; DSL; & wireless devices)
Information Source Awareness, Trust & Selection
- 1Source awareness : Have you heard of the following organizations before being contacted for this study? (National Cancer Institute; Center for Disease Control; The American Cancer Society)
- 2Source Trust : How much do you trust the information about cancer from (Doctor; family or friends; newspapers; the radio; the Internet; TV; Government; charities; and religious organizations)
- 3Primary source of cancer information : The most recent time you looked for cancer information, where did you go first? (Book; brochures; cancer organization; family; fried/co-workers; doctor or health provider; the Internet; library; magazines; newspaper; telephone numbers (1-800); complementary or alternative medicine provider; health insurance provider; television; & others)
- 1Effort taking: It took a lot of effort to get the information you needed.
- 2Frustration: You felt frustrated during your search for the information.
- 3Concerns quality of information: You were concerned about the quality of the information
- 4Hard to understand: The information you found was too hard to understand
- 5Confidence getting information: Overall, how confident are you that you could get advice of information about cancer if you needed it?
For the main analysis of the dataset, we will use descriptive statistics and inferential statistics including Chi-square tests, Mann–Whitney U tests, and Logistic Regression Analysis. For this preliminary analysis, we report some of the interesting dataset that may lead us to draw research hypotheses to test.
RESULTS OF PRELIMINARY ANALYSIS
Among the 7,674 respondents, the number of cancer information seekers was 3,570. Among the cancer information seekers, 689 respondents have a history of cancer. Among the self-informed cancer patients, the numbers of White group was 583, and of Non-White group was 62. This can be interpreted that, according to the results of our HINTS 2007 analysis, about 47% of the adult Americans estimated have ever sought information on cancer by self; 9% of the population is cancer patients seeking cancer information; and 0.008% of the population is Non-White cancer patients who also are cancer information seekers.
The White and Non-White groups show statistically significant differences in all socio-demographic variables. When compared to the White group, the Non-White group has less numbers of people age 65 or order χ2 (3, N=638) =12.65, p<0.01); less males χ2 (1, N=652) =5.74, p<.05); less college graduates χ2 (4, N=652) =18.35, p<.001); less people with insurance coverage χ2=(1, N=640) = 20.43, p<.001; and more numbers of unemployed χ2 (3, N=645)=13.49, p<.01) and more people who make combined household income of $35,000 or less a year χ2 (3, N=556) = 11.11, p<.01).
The White group has more experience in using the Internet (69.4%) than the Non-White group (56.5%) χ2= (1, N=652) = 4.72, p<.05. However, the two groups are not different in the mode of access the Internet at home.
The two groups show similarity in their primary source selection. The top four choices of both groups were Internet, printed materials (including books, brochures, magazines, newspaper), doctor, and friends or family, in that order. One percent of the White group uses library, and 0.8% uses cancer organizations for information on cancer. Interestingly, no single members of the Non-White group use library as their primary source, and more Non-White respondents use cancer organizations as their primary source (1.7%, 0.8%, respectively).
Overall, the Non-White group is less aware of established cancer information organizations than the White group. Nonetheless, the American Cancer Society is best known to the both groups χ2 (1, N=646)=17.58, p<.001, followed by the National Cancer Institute χ2=(1, N=641) = 8.32, p <.01 and the Center for Disease Control χ2 (1, N=641) = 9.65, p<.01.
The Non-White group shows higher level of trust in TV, t (370)=2.28, p<0.5, and in religious organizations t (368)=2.12, p<0.5, than the White group.
Among the five information competence variables, only the “confidence in getting advice or information” shows a significant difference between the two groups where Non-White group shows slightly higher confidence t (376)=2.46, p<.05.
The bi-annual national HINT 2007 study portrays the Non-White cancer patients who sought cancer information as the following: In comparisons to their White counterpart, the Non-White group tend to be composed of more younger generations, more females, fewer college graduates, more unemployed, less healthcare coverage, more people with lower income, and more people with less Internet experience. Revealing clear differences in the socio-economic characteristics between the two groups, this exploratory study confirms the findings reported in the numerous studies in and outside of health communication field. Our finding that younger cancer patients are proportionally higher in the Non-White group than in the White group needs further scrutiny. It may be attributed to the higher mortality rates among racial minority groups, to the high rates of the elderly racial minorities who do not seek information on their own, or to some other explanations.
In contrast to the socio-economic characteristic, we found some, but not major differences in the “cancer information seeking” of the two groups In general, the two groups showed very similar source selection behavior. Commonly in both groups, their primary information source was the Internet, followed by printed materials, and doctor. Nonetheless, our study revealed some noteworthy information seeking and source selection behaviors among the cancer patients in the Non-White group, distinctive from their counterparts. The cancer patients in the Non-White group were less aware of established cancer information organizations, such as NCI. No one in the Non-White group reported to use the library as their primary information source. Furthermore, the Non-White cancer patients who sought cancer information have higher trusts in TV and religious organizations, and have more self-confidence in getting advice or information than the White group.
In conclusion, our analysis of the 2007 HINTS data reveals continuing health disparity that is closely associated with race. People in the racial monitory groups are composed of more vulnerable people in the society in terms of gender, education, income, employment, healthcare coverage, and Internet accessibility. This finding calls for continuing, multi-faceted efforts to assist racial minority to bridge the gap still existing. Some of our findings that shows distinctive health information seeking and source selection behavior informs the field of more effective health information education and campaign. That is, their tendency to use less of the trustworthy cancer information source, such as the cancer information organizations and the library, and yet another tendency to have greater trust in TV urges greater emphasis on health literacy for this racial minority group. In addition, their greater trust in the information from religious organizations also informs more strategic planning for health literacy or health information campaign channeled through religious organization as well as television.
The next steps of this study will carry out weighted analyses of HINTS 2007 where minorities are over-sampled; run Logistic Regression Analyses to find out predictors of information competence; and investigate whether the predictors differ in the two racial groups.
- Centers for Disease Control and Prevention (n.a.). Black or African American Populations. Retrieved June 1, 2009 from http://www.cdc.gov/omhd/Populations/BAA/BAA.htm
- 2004). Bridging the digital divide: Reaching vulnerable populations. Journal of the American Medical Informatics Association, 11, 448–457. , , , , , & (
- 2004). The challenge of providing consumer health information services in public libraries. Washington, D.C.: American Association for the Advancement of Science Retrieved March 9, 2009, from http://www.healthlit.org/pdfs/AAASFINAL.pdf (
- 2004). Where Am I to Go? Use of the Internet for Consumer Health Information by Two Vulnerable Communities. Library Trends 53(2), 283–300. (
- 2007) A study of information seeking by cancer patients and their carers. Clinical Oncology 19(5), 356–362. , , , , , & (
- 2007). Information seeking and source selection among ePatients with cancer: Findings from the HINTS 2005. Proceedings of the American Society for Information Science and Technology 44(1), 1–10. & (
- 2006). Communication and racial inequities in health care. The American Behavior Scientist 49, 760–774. (
- Who goes to a library for cancer information in the e-health era? A secondary data analysis of the Health Information National Trends Survey (HINTS). Library & Information Science Research. , & (in press).
- 2002). Factors influencing medical information seeking among African American cancer patients. Health Communication 7(3), 205–19. , , , & (
- National Cancer Institute (2003). HINTS: Health Information National Trends Survey. Retrieved May 30, 2009 from http://hints.cancer.gov/hints/
- 2001). Introduction to the special issue: Everyday life information-seeking research. Library & Information Science Research 23(4), 301–304 & (
- 2009). Cancer information-seeking experiences: the implications of Hispanic ethnicity and Spanish language. Journal of Cancer Education 24(2), 141–7. , , , & (
- 2000). Public library consumer health information pilot project: results of a National Library of Medicine evaluation. Bulletin of the Med Library Association 88(4), 314–22. , , , , , & (