Ensuring access to high-quality cancer-related information is important for the success of cancer prevention and control efforts.
We conducted a population-based assessment of the barriers faced by people searching for cancer information.
Cross-sectional data from the National Cancer Institute’s 2003 Health Information National Trends Survey.
A nationally representative sample of individuals in the USA (n = 6,369).
We assessed whether respondents had ever sought cancer-related information and examined ratings of their information-seeking experiences and beliefs regarding causes of cancer and its prevention. Linear and logistic regression models were estimated to determine predictors of negative experiences and associations between experiences and cancer beliefs.
Nearly one half (44.9%) of Americans had searched for cancer information. Many reported negative experiences, including the search process requiring a lot of effort (47.7%), expressing frustration (41.3%), and concerns about the quality of the information found (57.7%). Respondents lacking health insurance or a high school education experienced the greatest difficulty. Compared to those reporting the most positive experiences, information seekers reporting more negative experiences were more likely to report that almost everything caused cancer [odds ratio (OR) 2.0, 95% confidence interval (CI) 1.5–2.6], that not much can be done to prevent cancer (OR 2.7, 95% CI 1.9–3.8), and that it is hard to know which cancer prevention recommendations to follow (OR 3.2, 95% CI 2.3–4.5).
While a significant proportion of the American public searches for cancer information, suboptimal experiences are common. Facilitation of information seeking will be critical for promoting informed decision making in cancer prevention and control.
This is a preview of subscription content, access via your institution.
Buy single article
Instant access to the full article PDF.
Tax calculation will be finalised during checkout.
Institute of Medicine. To Err is Human: Building a Safer Health System. Washington, DC: National Academy Press; 2000.
Institute of Medicine. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academy Press; 2001.
Charles C, Gafni A, Whelan T. Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). Soc Sci Med. 1997;44:681–92.
Woolf SH, Chan EC, Harris R, et al. Promoting informed choice: transforming health care to dispense knowledge for decision making. Ann Intern Med. 2005;143:293–300.
Rimer BK, Briss PA, Zeller PK, Chan ECY, Woolf SH. Informed decision making: what is its role in cancer screening? Cancer. 2004;101(5 Suppl):1214–28.
Arora NK, McHorney CA. Patient preferences for medical decision making: who really wants to participate? Med Care. 2000;38:335–41.
Levinson W, Kao A, Kuby A, Thisted RA. Not all patients want to participate in decision making. a national study of public preferences. J Gen Intern Med. 2005;20:531–5.
Viswanath K. Science and society: the communications revolution and cancer control. Nat Rev Cancer. 2005;5:828–35.
Cline RJ, Haynes KM. Consumer health information seeking on the Internet: the state of the art. Health Educ Res. 2001;16:671–92.
Hesse BW, Nelson DE, Kreps GL, et al. Trust and sources of health information: the impact of the Internet and its implications for health care providers: findings from the first Health Information National Trends Survey. Arch Intern Med. 2005;165:2618–24.
Rutten LJ, Arora NK, Bakos AD, Aziz N, Rowland J. Information needs and sources of information among cancer patients: a systematic review of research (1980-2003). Patient Educ Couns. 2005;57:250–61.
Ayanian JZ, Zaslavsky AM, Guadagnoli E, et al. Patients’ perceptions of quality of care for colorectal cancer by race, ethnicity, and language. J Clin Oncol. 2005;23:6576–86.
Nelson DE, Kreps GL, Hesse BW, et al. The Health Information National Trends Survey (HINTS): development, design, and dissemination. J Health Commun. 2004;9:443–60; discussion 81–4.
Arora NK, Johnson P, Gustafson DH, McTavish F, Hawkins RP, Pingree S. Barriers to information access, perceived health competence, and psychosocial health outcomes: test of a mediation model in a breast cancer sample. Patient Educ Couns. 2002;47:37–46.
Fox S. Health information online. Technical report from the Pew Internet and American Life Project. Washington, DC: Pew Research Center; 2005.
Fox S, Rainie L. Vital decisions: how Internet users decide what information to trust when they or their loved ones are sick. Technical report from the Pew Internet and American Life Project. Washington, DC: Pew Research Center; 2002.
Fox S, Fallows D. Internet health resources. Technical Report from the Pew Internet and American Life Project. Washington, DC: Pew Research Center; 2003.
Squiers L, Finney Rutten LJ, Treiman K, Bright MA, Hesse B. Cancer patients’ information needs across the cancer care continuum: evidence from the Cancer Information Service. J Health Commun. 2005;10 (1 Suppl):15–34.
Tu HT, Hargraves JL. Seeking health care information: most consumers still on the sidelines. Issue Brief Cent Stud Health Syst Change. 2003;(61):1–4.
Jung HP, Baerveldt C, Olesen F, Grol R, Wensing M. Patient characteristics as predictors of primary health care preferences: a systematic literature analysis. Health Expect. 2003;6:160–81.
Berland GK, Elliott MN, Morales LS, et al. Health information on the Internet: accessibility, quality, and readability in English and Spanish. JAMA. 2001;285:2612–21.
Silberg WM, Lundberg GD, Musacchio RA. Assessing, controlling, and assuring the quality of medical information on the Internet: caveant lector et viewor—let the reader and viewer beware. JAMA. 1997;277:1244–5.
Kim P, Eng TR, Deering MJ, Maxfield A. Published criteria for evaluating health related web sites: review. BMJ. 1999;318:647–9.
Jadad AR, Gagliardi A. Rating health information on the Internet: navigating to knowledge or to Babel? JAMA. 1998;279:611–4.
Viswanath K, Breen N, Meissner H, et al. Cancer knowledge and disparities in the information age. J Health Commun. 2006;11(1 Suppl):1–17.
Curtin R, Presser S, Singer E. Changes in telephone survey nonresponse over the past quarter century. Public Opinion Quarterly. 2005;69:87–98.
Biener L, Garrett CA, Gilpin EA, et al. Consequences of declining survey response rates for smoking prevalence estimates. Am J Prev Med. 2004;27:254–7.
William Waldron of Information Management Services, Inc. helped with statistical analyses.
This paper contains the personal opinions of Drs. Arora, Hesse, and Croyle and does not reflect any official position of the National Cancer Institute.
National Cancer Institute: Contract # N02-PC-15003
Conflict of Interest Statement
About this article
Cite this article
Arora, N.K., Hesse, B.W., Rimer, B.K. et al. Frustrated and Confused: The American Public Rates its Cancer-Related Information-Seeking Experiences. J GEN INTERN MED 23, 223–228 (2008). https://doi.org/10.1007/s11606-007-0406-y
- information seeking
- national survey
- health information
- information needs