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Objective: To better understand cancer clinical trials (CCT) information-seeking, a necessary precursor to patient and provider engagement with CCT., Methods: Data from the National Cancer Institute's Cancer Information Service (CIS) were used to examine CCT information-seeking patterns over a 5-year period. Descriptive and logistic regression analyses were conducted to examine characteristics of CIS inquiries and their associations with having a CCT discussion., Results: Between September 2018 - August 2023, 117,016 CIS inquiries originated from cancer survivors, caregivers, health professionals, and the general public; 27.5 % of these inquiries included a CCT discussion (n = 32,160). Among CCT discussions, 35.5 % originated from survivors, 53.5 % from caregivers, 6.1 % from the public, and 4.9 % from health professionals. Inquiries in Spanish had lower odds of a CCT discussion (OR=.26, [.25-.28]), whereas inquiries emanating from the CIS instant messaging (OR=2.29, [2.22-2.37]) and email (OR=1.24, [1.18-1.30]) platforms were associated with higher odds of discussing CCT compared to the telephone. Individuals who were male, younger, insured, and had higher income and education had significantly higher odds of a CCT discussion while those who were non-Hispanic Black and living in rural locales had significantly lower odds., Conclusions: Disparities in CCT information-seeking may contribute to downstream CCT participation., Practice Implications: Quality, language-concordant health information is needed to enable equitable awareness of - and ultimately engagement in - CCT., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Published by Elsevier B.V.)

Objective: This mixed-method study assessed 1) survivors' and parents' information needs; and 2) associations between unmet information needs and clinical and socio-demographic characteristics., Methods: Stage 1: CCS and parents of CCS, >5years post-diagnosis completed a questionnaire on information needs, overall health and perceived risk. Predictors for unmet information needs were assessed by multivariable regression. Stage 2: participants were interviewed in-depth on these topics., Results: Questionnaires were completed by 485 participants comprising 322 survivors (mean age: 26.7years, SD=7.9; time since diagnosis: 19.7years, SD=8.8) and 163 parents (child age: 12.9years, SD=2.4; time since diagnosis: 9.7years, SD=2.3), and complemented by 70 interviews. Survivors reported unmet information needs about late effects (57.5%) and parents for fertility issues (62.5%). Survivors had more unmet needs for medical information whereas parents had significantly more regarding sexual issues and lifestyle. Being a parent (p=0.001), dissatisfaction with follow-up care (p=0.003), lower overall health (p=0.014), higher perceived risk of late effects (p<0.001), and greater anxiety/depression (p<0.001) were significantly associated with more unmet needs., Conclusion: Unmet information needs were common for survivors and parents of CCS., Practice Implications: Future efforts towards tailoring information on potential late effects, healthy lifestyles and follow-up care may help to address unmet information needs., (Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.)

Objectives: Patients and consumers make many choices that affect their health and their health care. Some of these decisions are informed by evidence, but many are not. A growing body of research indicates that those who are more activated or engaged in their health are more likely to seek out and use information to inform their health decisions. In this paper we review the evidence about patient activation and information seeking, health behaviors, and health outcomes. We also review what is known about how to increase patient activation, and how best to support patients who are at different levels of activation to use information to support their choices., Discussion: Strategies can be tailored to support and information for patients at different levels of activation. These strategies might be implemented in different clinical settings and situations, tailored and targeted approaches for care transitions, health coaching, and in the use of shared-decision-making., Conclusions: Efforts to support informed consumer choices have largely been a 'one size fits all' approach. Understanding consumers, and trying to meet them where they are, is likely to be the focus of the 'next generation' of interventions to support informed consumer choices., (Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.)

Objective: This study explores cancer survivors' engagement with information about dieting to control weight from doctors, interpersonal, and media sources and examines whether engagement from these sources impacts subsequent dieting behavior., Methods: A total of 1128 respondents diagnosed with colorectal, breast, or prostate cancers were surveyed over three years following their cancer diagnoses. Using weighted logistic regression analyses, the authors predicted the odds of dieting based on earlier information engagement with sources, controlling for dieting in the previous year and confounders., Results: Participants reported talking with doctors more frequently (37%) than seeking or scanning from interpersonal and media sources about dieting (15-22%). Seeking from interpersonal and media sources, and discussion with physicians, significantly predicted dieting behavior. In addition, discussions with physicians increased the odds of subsequent dieting behavior by 2.32 times (95% CI: 1.50-3.61; p=.002), over and above the effects of other information engagement., Conclusion: Cancer survivors reported engaging with a variety of information sources about dieting. Engagement with doctors and information-seeking from interpersonal or media sources predicted cancer survivors' dieting behavior a year later., Practice Implications: The results may inform strategies to encourage and empower cancer survivors to engage with information about healthy lifestyle changes for promoting long-term health., (Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.)

Objective: Health information helplines have an important function in health education, prevention and counseling. Information and help services are increasingly provided online. This study focuses on the differences and similarities between online help services and telephone services., Methods: The telephone service of the Dutch AIDS STI helpline was compared to its e-mail equivalent. After consulting the helpline service, both callers and e-mailers (N(tot) = 455) were asked to participate in a survey that evaluated their background characteristics, contacting reasons, and satisfaction with the specific service and information received. The survey also included questions regarding the advice received from the helpline. A follow-up measure 4 weeks after the baseline survey evaluated to what extent clients acted upon the advice., Results: The study shows that both services are positively evaluated and are equally persuasive in their counseling. Differences between callers and e-mailers were found regarding background characteristics, content of the consultation, satisfaction, and the advice received., Conclusion: It can be concluded that online health information services are an important addition to, but not a replacement for, the traditional telephone helplines., Practice Implications: In order to provide an optimal health service to a wide public, both online and telephone counseling should be offered., (Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.)

Objective: This study aims to review systematically the available literature on health outcomes of online cancer support and resources., Methods: We searched major databases with the following selection criteria: (1) empirical study on use of online support or resources by cancer survivors, (2) reporting effects or outcomes of online support or resources, (3) focusing on adult cancer survivors, and (4) peer-reviewed articles published by 2010., Results: A total of 24 studies (37 articles) were included in the review. Most studies were focused on breast cancer survivors and had small sample sizes. Fifteen studies employed a cross-sectional design including eight qualitative studies. Only five studies used pre-post design, and four employed RCT design. The outcome measures have focused on psychosocial effects; most studies reported positive effects, although none of the RCT studies reported significant outcomes., Conclusion: Existing studies of online cancer support and resources have demonstrated preliminary but inconclusive evidence for positive outcomes. We call for additional studies with rigorous study designs and the inclusion of more diverse participants and cancer conditions., Practice Implications: Connecting diverse cancer survivors to culturally appropriate, evidence-based online support and resources is a strategy to enhance health outcomes., (Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.)

Objective: To examine the prevalence and predictors of patients' post-appointment online health information-seeking and the reasons behind their information searches., Methods: Survey of 274 Internet support community members who had been seen by a physician within 30 days. The questionnaire included measures of trust in the physician, health worries, changes in amount of worrying following the visit, online health information-seeking, and standard demographic and visit characteristics., Results: A majority of respondents (68%) went online in search of information after their visits. In a logistic regression analysis, going online was associated with lower trust (P=.002), greater worrying (P=.049), and becoming more (P=.024) or less worried (P=.05) by the visit. Among those who went online, the most common reasons for doing so were sheer curiosity (71%) and disappointment with some aspect of the physician's behavior (32%)., Conclusion: Patients in this online forum routinely turned to the Internet after their medical visits, but were especially likely to do so when trust in the physician was low, anxieties were high, and the visit altered (for better or worse) their anxiety levels., Practice Implications: Since many patients seek online information after their appointments, physicians should suggest credible websites suited to the circumstances of each patient., (Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.)

Objective: Health information-seeking behaviors (HISBs) are associated with active participation in cancer care decisions which, in turn, may positively impact health outcomes. The goal of this study was to develop a taxonomy of topics for which post-treatment cancer patients sought information, and to explore HISB patterns by sociodemographic factors and cancer type., Methods: We examined how health information seeking is associated with social determinants in a survey of 521 post-treatment cancer patients., Results: Four major topics of interest were found: disease/treatment, self-care management, health services, and work/finance. Assessment of the relationship between social determinants and these four topics showed associations for (1) HISBs on disease/treatment topics decreased with age and increased with education; (2) HISBs on self-care management increased with education and varied by cancer type; (3) HISBs on health services increased with education; and (4) HISBs on work/finance decreased with age and wealth, but increased with debt., Conclusion: These results demonstrate one pathway through which social determinants may drive communication inequalities, which may result in increased disparities in health outcomes., Practice Implications: Further exploration of the relationship between social determinants and information-seeking among post-treatment cancer patients may contribute to the development of strategies to reduce health disparities., (Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.)

Objective: Compare the characteristics of rural and urban callers to NCI's Cancer Information Service (CIS), and explore the association of geographic location and discussion of cancer clinical trials., Methods: Using CIS call data from 2006 to 2008, we assigned a rural or urban designation to caller ZIP codes using Rural-Urban Commuting Area Codes. Calls which discussed clinical trials were analyzed using univariate and multivariate analyses., Results: The CIS received 227,579 calls from 2006 to 2008 where geographic location could be determined. Overall, 10.3% of calls included a discussion of clinical trials; there were significantly more discussions among urban dwellers than rural individuals (10.5% versus 9.4%, respectively). Multivariate regression analyses supported the univariate findings. In addition, compared to other callers, patients (OR 5.58 [95% CI: 4.88, 6.39]) and family and friends (6.26 [5.48, 71.5]) were significantly more likely to discuss clinical trials., Conclusion: Urban callers were more likely than their rural counterparts to discuss cancer treatment trials, placing individuals living in rural areas at a disadvantage in learning about and communicating with their providers about possible participation in clinical trials., Practice Implications: Through its multiple access points, the CIS can serve as an important source of clinical trials information for rural cancer patients, family members, and providers., (Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.)

Objective: There is much research describing cancer patients' information needs and their use of the Internet, print media, and other sources to fulfill these needs. Yet little is known about whether patients with different types of cancer vary in their information needs and seeking behaviors. This study used population-based data to address this question., Methods: A sample was randomly drawn from the list of patients with breast, prostate, or colorectal cancer reported to the Pennsylvania Cancer Registry in 2005. Patients completed a mail survey (N=2010); respective response rates were 68%, 64%, and 61%., Results: Colorectal cancer patients reported consistently less information seeking than breast and prostate cancer patients. Multivariate analyses revealed that differences by cancer type were not explained by sex or other demographics, disease stage, or treatment received. These differences were most pronounced among patients with early stage cancer., Conclusion: Cancer patients have myriad information needs and use a range of sources to satisfy these needs, but there appear to be important differences in information engagement by cancer type., Practice Implications: Understanding differences in information seeking among disease-specific populations may help guide future patient education and decision making across the care continuum., (Copyright © 2010 Elsevier Ireland Ltd. All rights reserved.)

Objective: Patients increasingly use the Internet for medical information. For doctor-patient communication it is important to gain insight into the use and impact of medical Internet searches of patients. This study aims to evaluate patients' use of the Internet for information about their pain problem., Methods: A self-administered survey on pain-related Internet use was sent to 200 new patients attending a university pain center. The response rate was 61%., Results: Half of all respondents used the Internet for medical information and a smaller percentage (39%) searched for specific information about pain. Patients found information on the Internet to be of good quality and quite easy to find and understand. In general, Respondents did not learn anything new. The on-line medical information confirmed what they already knew. Less than half of the respondents discussed information from the Internet with their physician., Conclusion: Half of all patients used the Internet for medical information. Patients are reasonably certain that the information is accurate and reliable, while this may not always be the case., Practice Implications: Physicians should inquire about patients' use of various sources of information (such as the Internet) and offer to clarify any questions or concerns that arise from that use.

Objective: To examine the cancer information seeking behaviors and preferences of cancer survivors., Methods: This cross-sectional study used the National Cancer Institute's 2003 Health Information National Trends Survey data to evaluate 619 cancer survivors., Results: Two-thirds (67.5%, n = 418) of the survivors sought cancer information (InfoSeek) and 32.5% (n = 201) did not (NoInfoSeek). Significant predictors of cancer information seeking included age (less than 65), gender (female), income (>US$ 25,000/year), and having a regular health care provider (HCP)., Conclusion: Not all survivors actively look for cancer information. Although most survivors prefer receiving cancer information from their HCP, many turn to a variety of other sources, primarily the Internet., Practice Implications: HCPs should periodically assess information seeking behaviors and preferences of cancer survivors and actively refer patients to the Internet as an extension of and enhancement to their patient interactions. Credible and useful websites could be identified and recommended by the HCP as a means to address some of the barriers identified by survivors.

Objective: Health information is one of the most frequently sought topics on the Internet. A review of the literature was carried out to determine the use of the Internet for health information by the patient and how this could affect the patient-health professional relationship., Methods: This study is a literature review, summarizing multiple empirical studies on a single subject and is not intended to be a meta-analysis., Results: The review showed that the majority of health related Internet searches by patients are for specific medical conditions. They are carried out by the patient: (1) before the clinical encounter to seek information to manage their own healthcare independently and/or to decide whether they need professional help; (2) after the clinical encounter for reassurance or because of dissatisfaction with the amount of detailed information provided by the health professional during the encounter., Conclusion: There has been a shift in the role of the patient from passive recipient to active consumer of health information. Health professionals are responding to the more 'Internet informed' patient in one or more of three ways: (1) the health professional feels threatened by the information the patient brings and responds defensively by asserting their 'expert opinion' (health professional-centred relationship). (2) The health professional and patient collaborate in obtaining and analysing the information (patient-centred relationship). (3) The health professional will guide patients to reliable health information websites (Internet prescription)., Practice Implications: It is important that health professionals acknowledge patients' search for knowledge, that they discuss the information offered by patients and guide them to reliable and accurate health websites. It is recommended that courses, such as 'patient informatics' are integrated in health professionals' education.