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1.  Perceptions of cancer as a death sentence: Prevalence and consequences 
Journal of health psychology  2013;19(12):1518-1524.
Research suggests that perceiving cancer as a death sentence is a critical determinant of health care–seeking behaviors. However, there is limited information regarding the prevalence of this perception in the US population. Cross-sectional analysis of data (n = 7674 adults) from the 2007–2008 administration of the nationally representative Health Information National Trends Survey (HINTS 3) was performed. A majority (61.6%) of respondents perceived cancer as death sentence, and more than one-third (36%) of respondents reported that they avoid seeing their physicians. In the adult US population, perceiving cancer as a death sentence is common and is associated with education level and avoidance of physicians.
PMCID: PMC4099292  PMID: 23864071
cancer; health behavior; health psychology; perception; public health psychology
Fanconi Anemia (FA) is a rare genetic disorder associated with bone marrow failure (BMF), congenital anomalies, and cancer susceptibility. Stem cell transplantation (SCT) offers a potential cure for BMF or leukemia, but incurs substantial risks. Little is known about factors influencing SCT decision-making.
The study objective was to explore factors influencing FA patients’ and family members’ decision-making about SCT.
Using a mixed-methods exploratory design, we surveyed U.S. and Canadian FA patients and family members who were offered SCT.
Main variables studied
Closed-ended survey items measured respondents’ beliefs about the necessity, risks, and concerns regarding SCT; multivariate logistic regression was used to examine the association between these factors and the decision to undergo SCT. Open-ended survey items measured respondents’ perceptions of factors important to the SCT decision; qualitative analysis was used to identify emergent themes.
The decision to undergo SCT was significantly associated with greater perceived necessity (OR = 2.81, p = 0.004) and lower concern about harms of SCT (OR = 0.31, p = 0.03). Qualitative analysis revealed a perceived lack of choice among respondents regarding the use of SCT, which was related to physician influence and respondent concerns about patients’ quality of life.
Overall, study results emphasize the importance of the delicate interplay between provider recommendation of a medical procedure and patient/parental perceptions and decision-making. Findings can help providers understand the need to acknowledge family members’ perceptions of SCT decision-making and offer a comprehensive discussion of the necessity, risks, benefits, and potential outcomes.
PMCID: PMC3766454  PMID: 23621292
Fanconi Anemia; Stem Cell Transplantation; Psychosocial Factors; Genetics; Decision-Making
3.  Predictors of Perceived Ambiguity About Cancer Prevention Recommendations: Sociodemographic Factors and Mass Media Exposures 
Health communication  2009;24(8):764-772.
Cancer prevention recommendations reaching the public today are often ambiguous—that is, of uncertain reliability, credibility, or adequacy—yet little is known about the factors that influence public perceptions of this ambiguity. We used data from the 2005 Health Information National Trends Survey, conducted by the U.S. National Cancer Institute, to explore how sociodemographic characteristics and self-reported mass media exposures relate to perceptions of ambiguity regarding recommendations for the prevention of colon, skin, and lung cancer. Various sociodemographic characteristics (age, education, race) and mass media exposures (television, radio, Internet, health news) were found to be associated with perceived ambiguity about cancer prevention recommendations, and many of these associations varied by cancer type. These findings have important implications for future health communication research and practice.
PMCID: PMC4207435  PMID: 20183385
4.  Aversion to Ambiguity Regarding Medical Tests and Treatments: Measurement, Prevalence, and Relationship to Sociodemographic Factors 
Journal of health communication  2009;14(6):556-572.
Aversion to “ambiguity”—uncertainty about the reliability, credibility, or adequacy of risk-related information—is an important problem that may influence judgments and decisions about medical interventions. Ambiguity aversion (AA) varies among individuals, however, and has been understudied in the health domain. To explore this phenomenon further, we developed a new theory-based measure of aversion to ambiguity regarding medical tests and treatments, and examined the prevalence and association of AA with sociodemographic factors. The “AA-Med” scale was developed using a large survey sample of the U.S. public (n = 4,398), and scale psychometric properties and the population distribution of AA were evaluated. The scale demonstrated acceptable reliability (α = .73) and validity as ascertained by association with respondents’ interest in a hypothetical ambiguous cancer screening test. Ambiguity aversion (AA) was associated with older age, non-White race, lower education and income, and female sex. The AA-Med scale is a promising new measure, and AA is associated with several sociodemographic factors. We discuss implications of these findings and potential applications of the scale for future research.
PMCID: PMC4205160  PMID: 19731127
5.  Perceived ambiguity about cancer prevention recommendations: associations with cancer-related perceptions and behaviours in a US population survey 
Health information reaching the public today is often characterized by what decision theorists have termed ‘ambiguity’ – i.e. uncertainty regarding the information’s reliability, credibility or adequacy. This is a critical problem, as growing research suggests that ambiguity has important effects–promoting pessimistic judgments about risks and potential outcomes of risk-reducing behaviours, and lowering adoption of these behaviours. However, little is known about the public’s perceptions of ambiguity in the health information domain, the effects of these perceptions, and the factors that influence these effects.
To examine associations between perceived ambiguity regarding cancer prevention recommendations and prevention-related perceptions and behaviours, and to explore how these associations differ by cancer type.
Study design and participants
Cross-sectional analysis of data on 4070 adults participating in the 2005 US Health Information National Trends Survey.
Main variables and outcome measures
We examined associations between perceived ambiguity about colon, skin and lung cancer prevention recommendations and two main outcome variables: (i) risk-related cognitions (perceived cancer risk and preventability, cancer-related worry) and (ii) risk-modifying behaviours (colon cancer screening, sunscreen use and smoking abstinence).
Perceived ambiguity was inversely associated with perceptions of the preventability of all three cancers, and with cancer-specific risk-modifying behaviours including sigmoidoscopy–colonoscopy testing, sunscreen use and smoking abstinence. Relationships with cancer risk perceptions and worry varied across different cancer types.
Perceived ambiguity about cancer prevention recommendations has significant and predictable associations with cancer prevention-related cognitions and behaviours, and some associations differ by cancer type. These findings have implications for future research and communication efforts.
PMCID: PMC4198390  PMID: 17986069
ambiguity; cancer prevention; health behaviours; perceptions; recommendations
6.  Perceived Ambiguity About Cancer Prevention Recommendations: Relationship to Perceptions of Cancer Preventability, Risk, and Worry 
Journal of health communication  2006;11(0 1):51-69.
In this study, we apply the concept of “ambiguity,” as developed in the decision theory literature, to an analysis of potential psychological consequences of uncertainty about cancer prevention recommendations. We used Health Information National Trends Survey (HINTS) 2003 data to examine how perceived ambiguity about cancer prevention recommendations relates to three other cognitive variables known to influence cancer-protective behavior: perceived cancer preventability, perceived cancer risk, and cancer-related worry. Using logistic regression analyses, we tested several predictions derived from a review of literature on the effects of ambiguity perceptions on decision making, cognitions, and emotions. We found perceived ambiguity to have a strong negative relationship with perceived cancer preventability, consistent with “ambiguity aversion”—a pessimistic bias in the interpretation of ambiguity. Cancer worry moderated this relationship; ambiguity aversion increased with higher levels of worry. At the same time, perceived ambiguity was positively related to both perceived cancer risk and cancer worry. Furthermore, perceived risk partially mediated the relationship between perceived ambiguity and worry. These findings suggest that perceived ambiguity about cancer prevention recommendations may have broad and important effects on other health cognitions. We discuss ethical implications of these findings for health communication efforts, and propose a tentative causal model to guide future research.
PMCID: PMC4194067  PMID: 16641074
7.  Picking Up the Pace: Changes in Method and Frame for the Health Information National Trends Survey (2011–2014) 
Journal of health communication  2012;17(8):979-989.
Health communication and health information technology influence the ways in which health care professionals and the public seek, use, and comprehend health information. The Health Information National Trends Survey (HINTS) program was developed to assess the effect of health communication and health information technology on health-related attitudes, knowledge, and behavior. HINTS has fielded 3 national data collections with the fourth (HINTS 4) currently underway. Throughout this time, the Journal of Health Communication has been a dedicated partner in disseminating research based on HINTS data. Thus, the authors thought it the perfect venue to provide an historical overview of the HINTS program and to introduce the most recent HINTS data collection effort. This commentary describes the rationale for and structure of HINTS 4, summarizes the methodological approach applied in Cycle 1 of HINTS 4, describes the timeline for the HINTS 4 data collection, and identifies priorities for research using HINTS 4 data.
PMCID: PMC4151263  PMID: 23020763
9.  Using Collaborative Web Technology to Construct the Health Information National Trends Survey (HINTS) 
Journal of health communication  2012;17(8):990-1000.
Scientists are taking advantage of web-based technology to work in new collaborative environments, a phenomenon known as Science 2.0. The National Cancer Institute (NCI) created a web-based tool called HINTS-GEM that allows a diverse group of stakeholders to collaborate in a virtual environment by providing input on content for the Health Information National Trends Survey (HINTS). This involved stakeholders providing new suggested content and commenting and rating on existing content. HINTS is a nationally-representative survey of the US non-institutionalized adult population (see Finney Rutten et al. [this journal] for more information about the HINTS program). This paper describes the conceptual development of HINTS-GEM and provides results of its use by stakeholders in creating an improved survey instrument.
PMCID: PMC3490625  PMID: 23020764
10.  Patient perceptions of electronic medical records use and ratings of care quality 
Despite considerable potential for improving health care quality, adoption of new technologies, such as electronic medical records (EMRs), requires prudence, to ensure that such tools are designed, implemented, and used meaningfully to facilitate patient-centered communication and care processes, and better health outcomes. The association between patients’ perceptions of health care provider use of EMRs and health care quality ratings was assessed.
Data from two iterations of the Health Information National Trends Survey, fielded in 2011 and 2012, were pooled for these analyses. The data were collected via mailed questionnaire, using a nationally representative listing of home addresses as the sampling frame (n=7,390). All data were weighted to provide representative estimates of quality of care ratings and physician use of EMR, in the adult US population. Descriptive statistics, t-tests, and multivariable linear regression analyses were conducted.
EMR use was reported significantly more frequently by females, younger age groups, non-Hispanic whites, and those with higher education, higher incomes, health insurance, and a usual source of health care. Respondents who reported physician use of EMRs had significantly higher ratings of care quality (Beta=4.83, standard error [SE]=1.7, P<0.01), controlling for sociodemographic characteristics, usual source of health care, and health insurance status.
Nationally representative data suggest that patients’ perceptions of EMR use are associated with their perceptions of the quality of the health care they receive.
PMCID: PMC3968078  PMID: 24711715
electronic medical records; health care quality; health information technology
11.  Socioeconomic and Geographic Disparities in Health Information Seeking and Internet Use in Puerto Rico 
Geographically isolated Hispanic populations, such as those living in Puerto Rico, may face unique barriers to health information access. However, little is known about health information access and health information-seeking behaviors of this population.
To examine differences in health and cancer information seeking among survey respondents who ever used the Internet and those who did not, and to explore sociodemographic and geographic trends.
Data for our analyses were from a special implementation of the Health Information National Trends Survey conducted in Puerto Rico in 2009. We collected data through random digit dialing, computer-assisted telephone interviews (N = 639). The sample was drawn from the eight geographic regions of the Puerto Rico Department of Health. To account for complex survey design and perform weighted analyses to obtain population estimates, we analyzed the data using SUDAAN. Frequencies, cross-tabulation with chi-square, and logistic regression analyses were conducted. Geographic information system maps were developed to examine geographic distributions of Internet use and information seeking.
Of 639 participants, 142 (weighted percentage 32.7%) indicated that they had ever gone online to access the Internet or World Wide Web; this proportion was substantially lower than that of US mainland Hispanics who reported using the Internet (49%). While 101 of 142 (weighted percentage 59.6%) respondents who used the Web had ever sought health information, only 118 of 497 (weighted percentage 20.0%) of those who did not use the Web had sought health information. The pattern was similar for cancer information: 76 of 142 respondents (weighted percentage 47.2%) who used the Web had ever sought cancer information compared with 105 of 497 (weighted percentage 18.8%) of those who had not used the Web. These results were slightly lower but generally consistent with US mainland Hispanics’ health (50.9%) and cancer (26.4%) information seeking. Results of separate logistic regression models controlling for sociodemographic characteristics demonstrated that, compared with individuals who did not seek health or cancer information, those who did were over 5 times as likely to have used the Internet (odds ratio 5.11, P < .001). Those who sought cancer information were over twice as likely to have used the Internet (odds ratio 2.5, P < .05). The frequency of Internet use and health and cancer information seeking was higher in the San Juan metro region than in more rural areas.
Our results contribute to the evidence base for health and cancer communication planning for Puerto Rico, and suggest that health education and outreach efforts should explore the use of available and trusted methods of dissemination such as radio and television, as well as community-based health care providers and organizations, to supplement and encourage use of the Internet as a source of health information.
PMCID: PMC3409614  PMID: 22849971
Health information seeking; cancer information seeking; Internet use; disparities; special populations; geographic trends
12.  Grid-Enabled Measures 
American journal of preventive medicine  2011;40(5 Suppl 2):S134-S143.
Scientists are taking advantage of the Internet and collaborative web technology to accelerate discovery in a massively connected, participative environment —a phenomenon referred to by some as Science 2.0. As a new way of doing science, this phenomenon has the potential to push science forward in a more efficient manner than was previously possible. The Grid-Enabled Measures (GEM) database has been conceptualized as an instantiation of Science 2.0 principles by the National Cancer Institute with two overarching goals: (1) Promote the use of standardized measures, which are tied to theoretically based constructs; and (2) Facilitate the ability to share harmonized data resulting from the use of standardized measures. This is done by creating an online venue connected to the Cancer Biomedical Informatics Grid (caBIG®) where a virtual community of researchers can collaborate together and come to consensus on measures by rating, commenting and viewing meta-data about the measures and associated constructs. This paper will describe the web 2.0 principles on which the GEM database is based, describe its functionality, and discuss some of the important issues involved with creating the GEM database, such as the role of mutually agreed-on ontologies (i.e., knowledge categories and the relationships among these categories— for data sharing).
PMCID: PMC3088871  PMID: 21521586
13.  Harmonized patient-reported data elements in the electronic health record: supporting meaningful use by primary care action on health behaviors and key psychosocial factors 
Electronic health records (EHR) have the potential to improve patient care through efficient access to complete patient health information. This potential may not be reached because many of the most important determinants of health outcome are rarely included. Successful health promotion and disease prevention requires patient-reported data reflecting health behaviors and psychosocial issues. Furthermore, there is a need to harmonize this information across different EHR systems.
To fill this gap a three-phased process was used to conceptualize, identify and recommend patient-reported data elements on health behaviors and psychosocial factors for the EHR. Expert panels (n=13) identified candidate measures (phase 1) that were reviewed and rated by a wide range of health professionals (n=93) using the grid-enabled measures wiki social media platform (phase 2). Recommendations were finalized through a town hall meeting with key stakeholders including patients, providers, researchers, policy makers, and representatives from healthcare settings (phase 3).
Nine key elements from three areas emerged as the initial critical patient-reported elements to incorporate systematically into EHR—health behaviors (eg, exercise), psychosocial issues (eg, distress), and patient-centered factors (eg, demographics). Recommendations were also made regarding the frequency of collection ranging from a single assessment (eg, demographic characteristics), to annual assessment (eg, health behaviors), or more frequent (eg, patient goals).
There was strong stakeholder support for this initiative reflecting the perceived value of incorporating patient-reported elements into EHR. The next steps will include testing the feasibility of incorporating these elements into the EHR across diverse primary care settings.
PMCID: PMC3384114  PMID: 22511015
Common data elements; electronic health record; health behavior; meaningful use; measurement; measures; patient-centered; patient report; patient reported outcomes; primary care; prevention
14.  Health information seeking and media exposure among smokers: A comparison of light and intermittent tobacco users with heavy users 
Nicotine & Tobacco Research  2009;11(2):190-196.
We examined population-based data to assess potential differences between light and intermittent smokers as compared with moderate to heavy tobacco users in health information–seeking behavior and attitudes and media exposure.
Data from the 2003 and 2005 Health Information National Trends Surveys were combined to examine the information-seeking characteristics of light daily smokers (n = 594), intermittent smokers (n = 532), and moderate to heavy daily smokers (n = 1,131).
Compared with moderate to heavy daily smokers, intermittent smokers reported less exposure to television, greater trust in doctors as a source of health information, and greater intention to quit smoking. No differences in information-seeking experiences and preferences were observed between light daily smokers and moderate to heavy daily smokers. Intermittent smokers were distinct from moderate to heavy smokers in their information-seeking experiences and preferences.
The insight into the media use and information preferences of different smoking populations lays the groundwork for conducting further research to examine the information needs and preferences of smoking groups and to more effectively develop and deliver smoking cessation interventions.
PMCID: PMC2658901  PMID: 19264865
15.  Social Media Use in the United States: Implications for Health Communication 
Given the rapid changes in the communication landscape brought about by participative Internet use and social media, it is important to develop a better understanding of these technologies and their impact on health communication. The first step in this effort is to identify the characteristics of current social media users. Up-to-date reporting of current social media use will help monitor the growth of social media and inform health promotion/communication efforts aiming to effectively utilize social media.
The purpose of the study is to identify the sociodemographic and health-related factors associated with current adult social media users in the United States.
Data came from the 2007 iteration of the Health Information National Trends Study (HINTS, N = 7674). HINTS is a nationally representative cross-sectional survey on health-related communication trends and practices. Survey respondents who reported having accessed the Internet (N = 5078) were asked whether, over the past year, they had (1) participated in an online support group, (2) written in a blog, (3) visited a social networking site. Bivariate and multivariate logistic regression analyses were conducted to identify predictors of each type of social media use.
Approximately 69% of US adults reported having access to the Internet in 2007. Among Internet users, 5% participated in an online support group, 7% reported blogging, and 23% used a social networking site. Multivariate analysis found that younger age was the only significant predictor of blogging and social networking site participation; a statistically significant linear relationship was observed, with younger categories reporting more frequent use. Younger age, poorer subjective health, and a personal cancer experience predicted support group participation. In general, social media are penetrating the US population independent of education, race/ethnicity, or health care access.
Recent growth of social media is not uniformly distributed across age groups; therefore, health communication programs utilizing social media must first consider the age of the targeted population to help ensure that messages reach the intended audience. While racial/ethnic and health status–related disparities exist in Internet access, among those with Internet access, these characteristics do not affect social media use. This finding suggests that the new technologies, represented by social media, may be changing the communication pattern throughout the United States.
PMCID: PMC2802563  PMID: 19945947
Internet; social media; social networking; demography; population surveillance; eHealth, new technologies; health communication
16.  Assessing the Value of Team Science A Study Comparing Center- and Investigator-Initiated Grants 
Large cross-disciplinary scientific teams are becoming increasingly prominent in the conduct of research.
This paper reports on a quasi-experimental longitudinal study conducted to compare bibliometric indicators of scientific collaboration, productivity, and impact of center-based transdisciplinary team science initiatives and traditional investigator-initiated grants in the same field.
All grants began between 1994 and 2004 and up to 10 years of publication data were collected for each grant. Publication information was compiled and analyzed during the spring and summer of 2010.
Following an initial lag period, the transdisciplinary research center grants had higher overall publication rates than the investigator-initiated R01 (NIH Research Project Grant Program) grants. There were relatively uniform publication rates across the research center grants compared to dramatically dispersed publication rates among the R01 grants. On average, publications produced by the research center grants had greater numbers of coauthors but similar journal impact factors compared with publications produced by the R01 grants.
The lag in productivity among the transdisciplinary center grants was offset by their overall higher publication rates and average number of coauthors per publication, relative to investigator-initiated grants, over the 10-year comparison period. The findings suggest that transdisciplinary center grants create benefits for both scientific productivity and collaboration. (Am J Prev Med 2012;42(2):157–163) Published by Elsevier Inc. on behalf of American Journal of Preventive Medicine
PMCID: PMC3586819  PMID: 22261212
17.  Considering the Unspoken: The Role of Death Cognition in Quality of Life among Women with and without Breast Cancer 
Journal of Psychosocial Oncology  2012;30(1):128-139.
This study examined how breast cancer diagnosis influences underlying cognitions and explicit worries about death, and their roles in health-related quality of life (QOL). Forty-two women who underwent surgery for the removal of either a cancerous or benign breast mass indicated their worries about dying, and completed measures of death-thought accessibility and QOL. Women with cancer reported lowered physical, emotional, and functional well-being. Further, although they did not differ in explicit worry about death, women with cancer (compared to those with a benign mass) evidenced greater death thought accessibility, which in turn mediated the effect of cancer diagnosis on well-being.
PMCID: PMC3295244  PMID: 22269079
mortality awareness; cancer; breast; physical well-being; psychological well-being
18.  Effect of Adding a Virtual Community (Bulletin Board) to Randomized Controlled Trial 
Demand for online information and help exceeds most other forms of self-help. Web-assisted tobacco interventions (WATIs) offer a potentially low-cost way to reach millions of smokers who wish to quit smoking and to test various forms of online assistance for use/utilization and user satisfaction.
Our primary aim was to determine the utilization of and satisfaction with 2 versions of a smoking cessation website (, one of which included an asynchronous bulletin board (BB condition). A secondary goal was to measure changes in smoking behavior 3 months after enrollment in the study.
All participants were adult federal employees or contractors to the federal government who responded to an email and indicated a willingness to quit smoking in 30 days. We randomly assigned participants to either the BB condition or the publicly available version—usual care (UC)—and then assessed the number of minutes of website use and satisfaction with each condition as well as changes in smoking behavior.
Among the 1375 participants, 684 were randomized to the BB intervention, and 691 to the control UC condition. A total of 39.7% returned a follow-up questionnaire after 3 months, with similar rates across the two groups (UC: n=279, 40.3%; BB: n=267, 39.0%). Among those respondents assigned to the BB condition, only 81 participants (11.8%) elected to view the bulletin board or post a message, limiting our ability to analyze the impact of bulletin board use on cessation. Satisfaction with the website was high and did not differ significantly between conditions (UC: 90.2%, BB: 84.9%, P= .08). Utilization, or minutes spent on the website, was significantly longer for the BB than the UC condition (18.0 vs 11.1, P = .01) and was nearly double for those who remained in the study (21.2) than for those lost to follow-up (9.6, P< .001). Similar differences were observed between those who made a serious quit attempt versus those who did not (22.4 vs 10.4, P= .02) and between those with a quit date on or a few days prior to the enrollment date versus those with a later quit date (29.4 vs 12.5, P = .001). There were no statistically significant differences in quit rates between the BB and UC group, both in intent-to-treat analysis (ITT) and in analyzing the adherence subgroup (respondents) only. Combined across the UC and BB groups, 7-day abstinence was 6.8% with ITT and 17.6% using only participants in the follow-up (adherence). For participants who attempted to quit within a few days of study entry (vs 30 days), quit rates were 29.6% (ITT) and 44.4% (adherence).
Quit rates for participants were similar to other WATIs, with the most favorable outcomes demonstrated by smokers ready to quit at the time of enrolling in the trial and smokers using pharmacotherapy. Utilization of the asynchronous bulletin board was lower than expected, and did not have an impact on outcomes (quit rates). Given the demand for credible online resources for smoking cessation, future studies should continue to evaluate use of and satisfaction with Web features and to clarify results in terms of time since last cigarette as well as use of pharmacotherapy.
Trial Registration NCT00245076; (Archived by WebCite at
PMCID: PMC2630832  PMID: 19097974
Smoking cessation; Internet; World Wide Web; randomized trial; self-help
19.  Advancing the application, quality and harmonization of implementation science measures 
The field of implementation science (IS) encompasses a broad range of constructs and uses measures from a variety of disciplines. However, there has been little standardization of measures or agreement on definitions of constructs across different studies, fields, authors, or research groups.
We describe a collaborative, web-based activity using the United States National Cancer Institute’s (NCI) Grid-Enabled Measures (GEM) portal that uses a wiki platform to focus discussion and engage the research community to enhance the quality and harmonization of measures for IS health-related research and practice. We present the history, process, and preliminary data from the GEM Dissemination & Implementation (D&I) Campaign on IS measurement.
The GEM D&I Campaign has been ongoing for eight weeks as of this writing, and has used a combination of expert opinion and crowd-sourcing approaches. To date it has listed definitions for 45 constructs and summarized information on 120 measures. Usage of the website peaked at a rate of 124 views from 89 visitors on week seven. Users from seven countries have contributed measures and/or constructs, shared experience in using different measures, contributed comments, and identified research gaps and needs.
Thus far, this campaign has provided information about different IS measures, their associated characteristics, and comments. The next step is to rate these measures for quality and practicality. This resource and ongoing activity have potential to advance the quality and harmonization of IS measures and constructs, and we invite readers to contribute to the process.
PMCID: PMC3541131  PMID: 23231885
Implementation; Dissemination; Measures; Constructs; Quality of measurement; Harmonization; Technology-mediated social participation
20.  Use of the Internet to Communicate with Health Care Providers in the United States: Estimates from the 2003 and 2005 Health Information National Trends Surveys (HINTS) 
Despite substantial evidence that the public wants access to Internet-based communication with health care providers, online patient-provider communication remains relatively uncommon, and few studies have examined sociodemographic and health-related factors associated with the use of online communication with health care providers at a population level.
The aim of the study was to use nationally representative data to report on the prevalence of and changes in use of online patient-provider communication in 2003 and 2005 and to describe sociodemographic and health-related factors associated with its use.
Data for this study are from two iterations of the Health Information National Trends Survey (HINTS 2003, HINTS 2005). In both years, respondents were asked whether they had ever used email or the Internet to communicate with a doctor or a doctor’s office. Adult Internet users in 2003 (n = 3982) and 2005 (n = 3244) were included in the present study. Multivariate logistic regression analysis was conducted to identify predictors for electronic communication with health care providers.
In 2003, 7% of Internet users had communicated online with an health care provider; this prevalence significantly increased to 10% in 2005. In multivariate analyses, Internet users with more years of education, who lived in a metro area, who reported poorer health status or who had a personal history of cancer were more likely to have used online patient-provider communication.
Despite wide diffusion of the Internet, online patient-provider communication remains uncommon but is slowly increasing. Policy-level changes are needed to maximize the availability and effectiveness of online patient-provider communication for health care consumers and health care providers. Internet access remains a significant barrier to online patient-provider communication.
PMCID: PMC2047283  PMID: 17627929
Internet; patient-provider communication; electronic mail; information services, trends and utilization; medical informatics, trends; health education; health services; demography; data collection; health care surveys; neoplasms; regression analysis
21.  Increasing Public Awareness of Direct-to-Consumer Genetic Tests: Health Care Access, Internet Use, and Population Density Correlates 
Journal of Cancer Epidemiology  2012;2012:309109.
Uncertainty around the value of and appropriate regulatory models for direct-to-consumer (DTC) genetic testing underscores the importance of tracking public awareness of these services. We analyzed nationally representative, cross-sectional data from the Health Information National Trends Survey in 2008 (n = 7, 674) and 2011 (n = 3, 959) to assess population-level changes in awareness of DTC genetic testing in the U.S. and to explore sociodemographic, health care, Internet use, and population density correlates. Overall, awareness increased significantly from 29% in 2008 to 37% in 2011. The observed increase in awareness from 2008 to 2011 remained significant (OR = 1.39) even when adjusted for sociodemographic variables, health care access, Internet use, and population density. Independent of survey year, the odds of awareness of DTC genetic tests were significantly higher for those aged 50–64 (OR = 1.64), and 65–74 (OR = 1.60); college graduates (OR = 2.02); those with a regular source of health care (OR = 1.27); those with a prior cancer diagnosis (OR = 1.24); those who use the Internet (OR = 1.27); and those living in urban areas (OR = 1.25). Surveillance of awareness—along with empirical data on use of and response to genetic risk information—can inform public health and policy efforts to maximize benefits and minimize risks of DTC genetic testing.
PMCID: PMC3413952  PMID: 22899921
22.  Race/Ethnicity and the Perception of the Risk of Developing Prostate Cancer 
Although the higher risk of prostate cancer for African-American men is well known in the medical community, it is not clear how prevalent this knowledge is among African-American men themselves. Both the side effects of treatment and the lack of a demonstrated mortality benefit of routine screening with the prostate-specific antigen test among men in the general population have increased the focus on patient participation in decision making about prostate cancer screening.
Data on 1075 male respondents to the 2003 Health Information National Trends Study were collected from October 2002 to April 2003 and analyzed in 2008 to examine the associations among race/ethnicity, demographic characteristics, and the perception of the risk of developing prostate cancer for African-American, Hispanic, and non-Hispanic white men aged ≥45 years without a history of prostate cancer.
Nearly 50% of African-American men, 47.4% of Hispanic men, and 43.3% of non-Hispanic white men perceived their likelihood of getting prostate cancer as somewhat or very low. Nearly 18% of African-American men, 21.6% of Hispanic men, and 12.9% of non-Hispanic white men perceived themselves to be more likely to get prostate cancer than the average man of the same age.
Despite statistics to the contrary, few African-American men perceived themselves to have a higher-than-average risk of prostate cancer, while a higher percentage of Hispanic men perceived their risk to be higher than that of the average man of the same age. These findings suggest that all men, but particularly African-American and Hispanic men, could benefit from information regarding their specific risk of developing prostate cancer before making a decision about prostate cancer screening.
PMCID: PMC3347707  PMID: 19423272
23.  Moving the Science of Team Science Forward: Collaboration and Creativity 
American Journal of Preventive Medicine  2008;35(2 Suppl):S243-S249.
Teams of scientists representing diverse disciplines are often brought together for purposes of better understanding and, ultimately, resolving urgent public health and environmental problems. Likewise, the emerging field of the science of team science draws on diverse disciplinary perspectives to better understand and enhance the processes and outcomes of scientific collaboration. In this supplement to the American Journal of Preventive Medicine, leading scholars in the nascent field of team science have come together with a common goal of advancing the field with new models, methods, and measures. This summary article highlights key themes reflected in the supplement and identifies several promising directions for future research organized around the following broad challenges: (1) operationalizing cross-disciplinary team science and training more clearly; (2) conceptualizing the multiple dimensions of readiness for team science; (3) ensuring the sustainability of transdisciplinary team science; (4) developing more effective models and strategies for training transdisciplinary scientists; (5) creating and validating improved models, methods, and measures for evaluating team science; and (6) fostering transdisciplinary cross-sector partnerships. A call to action is made to leaders from the research, funding, and practice sectors to embrace strategies of creativity and innovation in a collective effort to move the field forward, which may not only advance the science of team science but, ultimately, public health science and practice.
PMCID: PMC3321548  PMID: 18619406
24.  The Collaboration Readiness of Transdisciplinary Research Teams and Centers 
American Journal of Preventive Medicine  2008;35(2 Suppl):S161-S172.
Growing interest in promoting cross-disciplinary collaboration among health scientists has prompted several federal agencies, including the NIH, to establish large, multicenter initiatives intended to foster collaborative research and training. In order to assess whether these initiatives are effective in promoting scientific collaboration that ultimately results in public health improvements, it is necessary to develop new strategies for evaluating research processes and products as well as the longer-term societal outcomes associated with these programs. Ideally, evaluative measures should be administered over the entire course of large initiatives, including their near-term and later phases. The present study focuses on the development of new tools for assessing the readiness for collaboration among health scientists at the outset (during Year One) of their participation in the National Cancer Institute’s Transdisciplinary Research on Energetics and Cancer (TREC) initiative. Indexes of collaborative readiness, along with additional measures of near-term collaborative processes, were administered as part of the TREC Year-One evaluation survey. Additionally, early progress toward scientific collaboration and integration was assessed, using a protocol for evaluating written research products. Results from the Year-One survey and the ratings of written products provide evidence of cross-disciplinary collaboration among participants during the first year of the initiative, and also reveal opportunities for enhancing collaborative processes and outcomes during subsequent phases of the project. The implications of these findings for future evaluations of team science initiatives are discussed.
PMCID: PMC3292855  PMID: 18619396
25.  Association Between Perceived Food Environment and Self-Efficacy for Fruit and Vegetable Consumption Among US Adults, 2007 
Consumption of diets high in fruits and vegetables is associated with reduced risk of chronic diseases, and self-efficacy and the food environment influence consumption of fruits and vegetables. We analyzed data from 3,021 non-Hispanic white (n = 2,187) and non-Hispanic black (n = 834) US adults who responded to National Cancer Institute's 2007 Food Attitudes and Behaviors Survey to assesss self-efficacy and perception of the food environment. Adults who perceived that it was easy to obtain fruits and vegetables when they ate out reported greater self-efficacy to consume fruits and vegetables than did participants who did not have this perception (odds ratio [OR] = 1.56, 95% confidence interval [CI], 1.24-1.97). However, adults who perceived that fruits were not available at restaurants where they ate out (OR = 0.65, 95% CI, 0.50-0.86) or that other (ie, non–fast food) restaurants offered enough choices of fruits and vegetables on their menus (OR = 0.76, 95% CI, 0.61-0.97) reported lower self-efficacy to consume fruits and vegetables than did participants who did not have these perceptions. Findings suggest that perceptions about availability of fruits and vegetables in restaurants are important to promote self-efficacy for consuming fruits and vegetables among adults.
PMCID: PMC3277397  PMID: 22172177

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