OBJECTIVE: To understand how Californians use and rate various health information sources, including the Internet. RESEARCH DESIGN: Computer-assisted telephone interviews through which surveys were conducted in English or Spanish. SUBJECTS: A household sample generated by random digit dialing. The sample included 1007 adults (18+), 407 (40%) of whom had access to the Internet. MAIN OUTCOME MEASURES: Past health information sources used, their usefulness and ease of use; future health information sources, which are trusted and distrusted; and concerns about integrating the Internet into future health information seeking and health care behaviors. RESULTS: Physicians and health care providers are more trusted for information than any other source, including the Internet. Among those with Internet access, a minority use it to obtain health information, and a minority is "very likely" to use e-mail to communicate with medical professionals or their own doctors and nurses, to refill prescriptions, or to make doctor appointments. Also, most of those with Internet access are "unlikely" to make their medical records available via the Internet, even if securely protected. CONCLUSIONS: The public, including frequent Internet users, has major concerns about the confidentiality of electronic medical records. Legislation may not assuage these fears and a long-term, open and collaborative process involving consumers and organizations from all the health care sectors may be needed for full public assurance.
The objective of this study was to examine access and use of health-related information online in rural versus nonrural Internet users, using national data from the 2006 Pew Internet and American Life Project. Materials and Methods: A national telephone survey of 2,928 adults in August 2006 yielded a sample of 1,992 adults who use the Internet regularly. A structured interview was administered to assess frequency of Internet use and access and use of health-related information online. Results: Most Internet-using rural adults search for health-related information online; two-thirds seek information about specific medical problems and over half seek information about treatment. Three-fifths of rural adults surveyed stated that online health-related information affected the decisions they made in health maintenance and managing treatment of an illness. More than one-third reported being significantly helped by information they found, whereas one-fourth reported being confused. Comparisons between rural and nonrural Internet users suggested that rural users were more likely to seek information about smoking cessation (χ2[1, N=1,990]=7.91, p<0.01) and mental health issues (χ2[1, N=1,988]=3.71, p=0.05), less likely to seek information about a particular doctor or hospital (χ2[1, N=1,983]=15.49, p<0.001), and more likely to report being helped (χ2[1, N=1,534]=5.24, p<0.05)—but also confused (χ2[1, N=1,592]=9.83, p<0.01)—by information they found. Conclusions: Rural Americans are increasingly using the Internet to acquire information about chronic disease, mental health, doctors, and treatment options. Priorities should include further development and rigorous evaluation of online resources to ensure high-quality, more direct tailoring of resources to rural families and development of tools to assist consumers in assessing the credibility of online information.
rural; Internet; health information
Millions of consumers have accessed health information online. However, little is known about their health status.
To explore use of Internet health information among those who were sicker (fair/poor general health status) compared with those reported being healthier.
A national, random-digit telephone survey by the Pew Internet & American Life Project identified 521 Internet users who go online for health care information. Our primary independent variable was general health status rated as excellent, good, fair, or poor. Patterns of Internet use, and types of information searched were assessed.
Among the 521 users, 64% were female, most (87%) were white, and median age was 42 years. Most individuals indicated that they learned something new online (81%) and indicated that they believe most information on the Internet (52%). Compared with those with excellent/good health, those with fair/poor health (N = 59) were relative newcomers to the Internet but tended to use the Internet more frequently, were more likely to use online chats, were less likely to search for someone other than themselves, and were more likely to talk about the new information with their physician (odds ratio 3.3 [95% confidence interval 1.8-6.3]), after adjustment for age, education and income.
Health care professionals should be aware that their sicker patients are more likely to ask them about information they found online. Physicians, public health professionals, and eHealth developers should work together to educate patients about searching for health information online and to provide tools for them to navigate to the highest quality information.
Internet; patient education; communication; health status
The role of a medical librarian includes guiding consumers to search for information related to specific health needs and interpret information for personal use. Little is known about barriers to accessing health information and clinical services for those with cognitive and physical disabilities. The purpose of this paper is to describe a statewide needs assessment of the health information and services needs of individuals with disabilities and their caregivers.
Data from the needs assessment conducted by the Health Services Training Project of more than 1,000 respondents indicate unmet needs for outreach to increase effective use of library and information resources. Fewer consumers and their caregivers utilized the Internet to search for health information as compared to clinical service providers and students in health professions. A majority of consumers reported difficulty obtaining and understanding online health information. Service providers and students shared concerns about information quality. Consumers and caregivers expressed highest levels of trust in information provided by service providers, nonprofit health agencies, reference books, and libraries.
Caregivers; cognitive disabilities; health care providers; online health information; physical disabilities; surveys
The Internet is changing how people receive health information and health care. All who use the Internet for health-related purposes must join together to create an environment of trusted relationships to assure high quality information and services; protect privacy; and enhance the value of the Internet for both consumers and providers of health information, products, and services. The goal of the "e-Health Code of Ethics" is to ensure that all people worldwide can confidently, and without risk, realize the full benefits of the Internet to improve their health. The draft code, presented in this paper, has been prepared as a result of the "eHealth Ethics Summit," which convened in Washington DC on 31 January 2000 - 2 February 2000, organized by the Internet Healthcare Coalition and hosted by the World Health Organisation/Pan-American Health Organisation (WHO/PAHO), and attended by a panel of about 50 invited experts from all over the world. It sets forth guiding principles under five main headings: candor and trustworthiness; quality; informed consent, privacy, and confidentiality; best commercial practices; and best practices for provision of health care on the Internet by health care professionals.
Internet; Ethics; Quality of Health Care
Searches for health information are among the most common reasons that consumers use the Internet. Both consumers and quality experts have raised concerns about the quality of information on the Web and the ability of consumers to find accurate information that meets their needs.
To produce a national stakeholder-driven agenda for research, technical improvements, and education that will improve the results of consumer searches for health information on the Internet.
URAC, a national accreditation organization, and Consumer WebWatch (CWW), a project of Consumers Union (a consumer advocacy organization), conducted a review of factors influencing the results of online health searches. The organizations convened two stakeholder groups of consumers, quality experts, search engine experts, researchers, health-care providers, informatics specialists, and others. Meeting participants reviewed existing information and developed recommendations for improving the results of online consumer searches for health information. Participants were not asked to vote on or endorse the recommendations. Our working definition of a quality Web site was one that contained accurate, reliable, and complete information.
The Internet has greatly improved access to health information for consumers. There is great variation in how consumers seek information via the Internet, and in how successful they are in searching for health information. Further, there is variation among Web sites, both in quality and accessibility. Many Web site features affect the capability of search engines to find and index them.
Research is needed to define quality elements of Web sites that could be retrieved by search engines and understand how to meet the needs of different types of searchers. Technological research should seek to develop more sophisticated approaches for tagging information, and to develop searches that "learn" from consumer behavior. Finally, education initiatives are needed to help consumers search more effectively and to help them critically evaluate the information they find.
eHealth; Internet; information management; health services research; quality of health care; consumer participation; patient education
The use of information technology to provide health information to the public has grown at a rapid pace. Numerous sources of health care information within both the print and Internet media are now available. Yet, their availability raises concerns about the quality of the information provided and questions about which is the most effective method for transmitting health information to consumers. We present an interactive method of presenting high-quality health information that uses a new approach: an integration of the telephone and the computer also called computer telephony. Telephone-Linked Communication for Health Information (TLC-HI) is a computer-based telecommunications system that functions as an educator to people in search of answers to health-related issues. To create TLC-HI, we converted validated print-based consumer information into computer-controlled conversational dialogues. We discuss the potential that the TLC-HI approach holds for improving the way health information is communicated.
Understanding how and when patients use nonphysician sources of health information is important to facilitate shared decision making within provider outpatient visits. However, little is known about which older adults seek health information on the internet or when.
To determine how patient characteristics are related to seeking health information online and to the timing of these searches in relation to doctor visits.
Six thousand two hundred and seventy-nine respondents (aged 63 to 66 years) who completed the 2004 round of phone and mail surveys (70% response) as part of the Wisconsin Longitudinal Study Graduate Sample.
Self-reported use of the internet to search for health information and timing of use.
One-third of respondents had searched online for information about their own health or health care. Half of these searched for health information unrelated to their last doctor visit, while 1/3 searched after a visit, and 1/6 searched before. Among respondents with internet access at home or work, years of education (odds ratio [OR]=1.09, confidence interval [CI]=1.06 to 1.13) and openness-to-experience (OR=1.26, CI=1.16 to 1.36) were positively associated with searching online for health information irrespective of timing in relation to doctor visits. Compared with those who had never sought health information online, sicker individuals (especially those with cancer, OR=1.51, CI=1.14 to 1.99) were more likely to seek information online after a doctor visit. Attitudinal and personality factors were related to seeking health information online before or unrelated to a visit.
There are important differences in the timing of online health information searches by psychological and health characteristics among older adults with internet access.
medical informatics; aging; decision making; doctor-patient relationships; survey research
On more and more websites, consumers are provided with public reports about health care. This move toward provision of more comparative information has resulted in different information types being published that often contain contradictory information.
The objective was to assess the current state of the art in the presentation of online comparative health care information and to compare how the integration of different information types is dealt with on websites. The content analysis was performed in order to provide website managers and Internet researchers with a resource of knowledge about presentation formats being applied internationally.
A Web search was used to identify websites that contained comparative health care information. The websites were systematically examined to assess how three different types of information (provider characteristics and services, performance indicators, and health care user experience) were presented to consumers. Furthermore, a short survey was disseminated to the reviewed websites to assess how the presentation formats were selected.
We reviewed 42 websites from the following countries: Australia, Canada, Denmark, Germany, Ireland, the Netherlands, Norway, the United Kingdom, the United States, and Sweden. We found the most common ways to integrate different information types were the two extreme options: no integration at all (on 36% of the websites) and high levels of integration in single tables on 41% of the websites). Nearly 70% of the websites offered drill down paths to more detailed information. Diverse presentation approaches were used to display comparative health care information on the Internet. Numbers were used on the majority of websites (88%) to display comparative information.
Currently, approaches to the presentation of comparative health care information do not seem to be systematically selected. It seems important, however, that website managers become aware of the complexities inherent in comparative information when they release information on the Web. Important complexities to pay attention to are the use of numbers, the display of contradictory information, and the extent of variation among attributes and attribute levels. As for the integration of different information types, it remains unclear which presentation approaches are preferable. Our study provides a good starting point for Internet research to further address the question of how different types of information can be more effectively presented to consumers.
Consumer health information; information display; decision making; Internet; international comparison; content analysis
The Internet has opened many doors with its accessibility to information, entertainment and web-based communities. For young men who have sex with men (YMSM), the Internet can provide access to information on relevant sexual behavior and health information, stories from other men about relationship issues, and a venue for locating potential sexual and dating partners. Understanding YMSM’s motivations for going online for information, advice or sexual relationships, is important as the Internet becomes increasingly used not only as a space to find sexual partners, but also as a venue for HIV and STI interventions. Having an understanding of the risks associated with searching for partners online, and how and why YMSM use the Internet for a variety of purposes, can inform the development of more effective Internet-based risk reduction programs. This manuscript presents qualitative and quantitative data from the Healthy Young Men’s Study, a longitudinal study of an ethnically diverse cohort of 526 YMSM. Qualitative interviews (N=24) described not only the prevalence of using the Internet for finding sexual partners and the possible benefits and risks associated with that practice, but also the processes and perceptions of using this mechanism. Our data indicate that YMSM use the Internet to find information related to sex and sexuality, seek friendships, sexual partners as well as “hook-ups” or casual sex. Findings are presented in relation to how YMSM researchers and interventionists can identify how to most effectively reach YMSM through online methods.
young men who have sex with men; Internet; gay/homosexual; relationships; sexual education
The Internet is changing how people receive health information and health care. All who use the Internet for health-related purposes must join together to create an environment of trusted relationships to assure high quality information and services; protect privacy; and enhance the value of the Internet for both consumers and providers of health information, products, and services. The goal of the e-Health Code of Ethics is to ensure that people worldwide can confidently and with full understanding of known risks realise the potential of the Internet in managing their own health and the health of those in their care. The final e-Health Code of Ethics, presented in this paper, has been prepared as a result of the "e-Health Ethics Summit," which convened in Washington DC on 31 January 2000 - 2 February 2000. The summit, organized by the Internet Healthcare Coalition and hosted by the World Health Organisation/Pan-American Health Organisation (WHO/PAHO), was attended by a panel of about 50 invited experts from all over the world and produced the foundation for a draft code, which was released 18 February  for an online public consultation period which ended on 14 April 2000. The final Washington e-Health Code of Ethics sets forth guiding principles under eight main headings: candor; honesty; quality; informed consent; privacy; professionalism in online health care; responsible partnering; and accountability.
Note: Abstract, keywords, acknowledgements and references have been added by the editor and are not part of the final Code.
Internet; Ethics; Quality of Health Care
To determine what types of consumers use the Internet as a source of health information
A survey of consumer use of the Internet for health information conducted during December 2001 and January 2002
We estimated multivariate regression models to test hypotheses regarding the characteristics of consumers that affect information seeking behavior
Respondents were randomly sampled from an Internet-enabled panel of over 60,000 households. Our survey was sent to 12,878 panel members, and 69.4 percent of surveyed panel members responded. We collected information about respondents' use of the Internet to search for health information and to communicate about health care with others using the Internet or e-mail within the last year
Individuals with reported chronic conditions were more likely than those without to search for health information on the Internet. The uninsured, particularly those with a reported chronic condition, were more likely than the privately insured to search. Individuals with longer travel times for their usual source of care were more likely to use the Internet for health-related communication than those with shorter travel times
Populations with serious health needs and those facing significant barriers in accessing health care in traditional settings turn to the Internet for health information.
Internet; health information; uninsured; travel time; chronic conditions
Consumer retrieval of health information through the internet has become prevalent. In the past, physicians provided filtered health
information to the consumer. However, the availability of health related information including disease specific research trends over
the World Wide Web is useful for clinicians and consumers. The use of internet based health care information by clinicians and
consumers have increased in recent years. Nonetheless, consumers often have difficulties in evaluating such data in a comprehensive
manner. Here, we describe the current status of health care related data over the World Wide Web.
healthcare websites; symptom checker; disease description; navigability; user friendly; clinical decision support system
The World Wide Web is being used increasingly as a resource for accessing health-related information. In our study, we identified types of health-related Web sites visited most often, determined how often patients shared Web-accessed health information with their doctors, and examined factors that encouraged Internet use for locating health-related information. We also compared health-related Internet use among people who did not have any type of chronic disease with people who reported having one or more chronic diseases.
We merged data from the 2002 and 2003 HealthStyles surveys to generate frequency and descriptive statistics and used multivariate logistic regression to estimate odds ratios.
Approximately 35% of survey participants reported using the Internet to search for health-related information. Among them, the Web sites visited most often included health information portals, government agencies, and nonprofit organizations. About 53% reported that they "sometimes" shared Internet information with their doctors. The most important features of the Internet that would encourage its use for health information were ease of finding and using the information and clarity of the information provided. Internet use differed by sex and age and was strongly associated with income and education. Respondents who reported having a chronic disease (odds ratio [OR] = 1.30; 95% confidence interval [CI], 1.16–1.45) were more likely to use the Internet to access health-related information, especially among those with depression (OR = 1.47; 95% CI, 1.27–1.71) and high cholesterol (OR = 1.18; 95% CI, 1.02–1.37). In addition, respondents who reported having two or more chronic diseases (OR = 1.35; 95% CI, 1.16–1.56) were more likely to search for online health information than respondents who reported having no chronic disease.
Public health professionals have a unique opportunity to use the Internet as a tool to complement and supplement the health information that the public receives from health care professionals.
The Internet has become a common source for consumers to seek health information across a wide range of topics including searching for clinical trials. However, not much is known about what consumers search for in relation to clinical trials and how they formulate their search queries. In this study, we use log file data from TrialX.com, a consumer-centric website that provides clinical trial information to ascertain patterns in consumer queries. We analyzed semantic patterns in the queries by mapping query keywords to the UMLS Semantic Types and performed a manual evaluation of user paths. We found that the queries can be grouped into combinations of information needs related to condition, location and treatment. The results also suggested that the consumers using longer search queries with multiple Semantic Types are more likely to take action to participate in clinical trials. The study provides early insights that can be used to inform changes in website content and information display to improve clinical trials information seeking.
The Internet has revolutionized the way in which many Americans search for health care information. Unfortunately, being able to use the Internet for this purpose is predicated on having access to the Internet and being able to understand and comprehend online health information. This is especially important for parents of children with special health care needs who are forced to make many medical decisions throughout the lives of their children. Yet, no information is available about this vulnerable group.
For parents of children with special health care needs we sought to (1) describe their Internet access and use, (2) determine which child and household factors were associated with Internet use, (3) describe eHealth literacy of Internet users, and (4) determine which child and household factors were associated with greater eHealth literacy.
This was a cross-sectional telephone survey of 2371 parents whose children with special health care needs were enrolled in Florida’s Medicaid and State Children’s Health Insurance Plan (SCHIP) programs (4072 parents were approached). To be enrolled in the program, families must have incomes that are less than or equal to 200% of the federal poverty level. The eHealth Literacy Scale (eHEALS) was used to measure eHealth literacy. Descriptive and multivariate analyses were conducted to address the study objectives.
The survey response rate was 58.2%. Participating parents were mainly female (2154/2371, 91%), white non-Hispanic (915/2371, 39%), English speaking (1827/2371, 77%), high school graduates (721/2371, 30%), married (1252/2371, 53%), and living in a two-parent household (1212/2371, 51%). Additionally, 82% of parents (1945/2371) in the sample reported that they used the Internet, and 49% of those parents used it daily (1158/2371). Almost three-quarters of Internet users had access to the Internet at home while about one-half had access at work. Parents who were African American, non-English speaking, older, and not college graduates were less likely to use the Internet than their referent groups (P < .001). About 74% of Internet users (1448/1945) reported that they knew how to find health information for their children. However, only about one-half (1030/1945) reported that they can tell high quality from low quality resources online or that they feel confident in using information accessed online to make health decisions. Multivariate regression results consistently showed that being a non-English speaker, having less than a high school education, and being older were all significantly associated with lower eHealth literacy (all P < .001).
Low-income parents of children with special health care needs have access to and use the Internet as a source of information about their children's health. However, some parents are unable to distinguish between high and low quality information and are not confident in using the Internet. This information is timely because as the pressure to use the Internet to empower consumers and exchange information increases, issues related to access and disparities must be better understood.
Children; Internet; Medicaid
The number of health-related websites has proliferated over the past few years. Health information consumers confront a myriad of health related resources on the internet that have varying levels of quality and are not always easy to comprehend. There is thus a need to help health information consumers to bridge the gap between access to information and information understanding—i.e. to help consumers understand health related web-based resources so that they can act upon it. At the same time health information consumers are becoming not only more involved in their own health care but also more information technology minded. One way to address this issue is to provide consumers with tailored information that is contextualized and personalized e.g. directly relevant and easily comprehensible to the person's own health situation. This paper presents a current trend in Consumer Health Informatics which focuses on theory-based design and development of contextualized and personalized tools to allow the evolving consumer with varying backgrounds and interests to use online health information efficiently. The proposed approach uses a theoretical framework of communication in order to support the consumer's capacity to understand health-related web-based resources.
consumer health information; internet; contextualization of information; personalization
Using a functional theory of media use, this paper examines the process of health-information seeking in different domains of Internet use.
Based on an analysis of the 1999 HealthStyles data, this study was designed to demonstrate that people who gather information on the Internet are more health-oriented than non-users of Internet health information.
The Porter Novelli HealthStyles database, collected annually since 1995, is based on the results of nationally representative postal mail surveys. In 1999, 2636 respondents provided usable data for the HealthStyles database. Independent sample t-tests and logistic regression analyses were conducted.
The results showed that individuals who searched for health information on the Internet were indeed more likely to be health-oriented than those who did not. Consumers who sought out medical information on the Internet reported higher levels of health-information orientation and healthy activities, as well as stronger health beliefs than those who did not search for medical news on the Internet. It was observed that those who reported searching for information about drugs and medications on the Internet held stronger health beliefs than the non-searchers. Comparison of individuals who reported seeking out information about specific diseases on the Internet with individuals who did not showed those who sought out disease-specific information on the Internet to be more health-oriented. Finally, consumers who sought out healthy lifestyle information on the Internet were more health conscious and more health-information oriented than those who did not. They were also more likely to hold stronger health-oriented beliefs and to engage in healthy activities.
The results support the functional theory of Internet use. Internet searchers who used the Internet for a wide range of health purposes were typically more health oriented than non-searchers.
Internet; health beliefs; health consciousness; consumers; information seeking; functional approach
There is a growing interest in understanding the effect that online information seeking has on patient experiences, empowerment, and interactions with health care providers. This mixed-methods study combines surveys and in-depth interviews with 41 parents of paediatric cancer patients in the US to examine how parents think about, evaluate, access, and use the Internet to seek information related to their child’s cancer. We find that during the acute crisis of a child being diagnosed with cancer parents preferred to receive information related to their child’s diagnosis, prognosis, and treatment options from a trusted health care provider rather than through the Internet. To this end, we find that access to medically related cancer information through the Internet was deemed untrustworthy and frightening. Parents’ reasons for avoiding online information seeking included fear of what they might find out, uncertainty about the accuracy of information online, being overloaded by the volume of information online, and having been told not to go online by oncologists. Some parents also had logistical barriers to accessing the Internet. While most parents did not turn to the Internet as a source of health-related information, many did use the Internet to connect with sources of social support throughout their child’s illness.
internet; information seeking; health behavior; cancer
The Internet offers consumers unparalleled opportunities to acquire health information. The emergence of the Internet, rather than more-traditional sources, for obtaining health information is worthy of ongoing surveillance, including identification of the factors associated with using the Internet for this purpose.
To measure the prevalence of Internet use as a mechanism for obtaining health information in the United States; to compare such Internet use with newspapers or magazines, radio, and television; and to identify sociodemographic factors associated with using the Internet for acquiring health information.
Data were acquired from the Second Osteopathic Survey of Health Care in America (OSTEOSURV-II), a national telephone survey using random-digit dialing within the United States during 2000. The target population consisted of adult, noninstitutionalized, household members. As part of the survey, data were collected on: facility with the Internet, sources of health information, and sociodemographic characteristics. Multivariate analysis was used to identify factors associated with acquiring health information on the Internet.
A total of 499 (64% response rate) respondents participated in the survey. With the exception of an overrepresentation of women (66%), respondents were generally similar to national referents. Fifty percent of respondents either strongly agreed or agreed that they felt comfortable using the Internet as a health information resource. The prevalence rates of using the health information sources were: newspapers or magazines, 69%; radio, 30%; television, 56%; and the Internet, 32%. After adjusting for potential confounders, older respondents were more likely than younger respondents to use newspapers or magazines and television to acquire health information, but less likely to use the Internet. Higher education was associated with greater use of newspapers or magazines and the Internet as health information sources. Internet use was lower in rural than urban or suburban areas.
The Internet has already surpassed radio as a source of health information but still lags substantially behind print media and television. Significant barriers to acquiring health information on the Internet remain among persons 60 years of age or older, those with 12 or fewer years of education, and those residing in rural areas. Stronger efforts are needed to ensure access to and facility with the Internet among all segments of the population. This includes user-friendly access for older persons with visual or other functional impairments, providing low-literacy Web sites, and expanding Internet infrastructure to reach all areas of the United States.
Internet, health care surveys, socioeconomic factors, age factors, family practice
Health care consumers increasingly obtain health information from the Internet to inform their health care; the health care consumer, who also has the role of patient, maintains the right to access information from sources of their choosing for this purpose. However, noteworthy considerations exist including information appraisal skills, health literacy and the patient-provider relationship. Awareness and education are warranted to assist the health care consumer in achieving proficiency as they turn to the Internet for health information.
consumer health information; patients; Internet; usability of health information
Unlike many patients of the past, today's health-care users want to become more informed about their illnesses, and they want the most current information. The Internet has become a popular way to access current information, and since its introduction more people are turning to it to find medical information. Studies report that anywhere from 36% to 55% of the American population that use the Internet is using the Internet to research medical information, and these percentages have been rising. Cancer is 1 of the top 2 diseases about which people seek information on the Internet. Some studies have specifically asked whether breast cancer patients access the Internet for medical information; estimates range from 10% to 43% of breast cancer patients who use the Internet, with higher usage being associated with more education, greater income, and younger age.
To identify where breast cancer patients find medical information about their illness and to track changes over time, from active treatment to survivorship status.
Participants were 224 women who had been recently diagnosed with Stage I, Stage II, or Stage III breast cancer. Each woman was contacted approximately 8 months and 16 months after diagnosis and was asked about 10 different information sources they could have used to obtain information or support about their breast cancer.
Eight months after diagnosis, the top 3 information sources used by women were books (64%), the Internet (49%), and videos (41%). However, at follow-up (16 months after diagnosis), the most frequently cited information source was the Internet (40%), followed by books (33%), and the American Cancer Society (17%). We found that women continued to use the Internet as a means of gathering information even after their treatment ended. Significant unique predictors of Internet use were more years of formal education and younger ages. Cancer stage was not a significant predictor of Internet use.
Previous research has been mixed about the percentage of cancer patients who use the Internet to gather information about their illnesses. The results of the present study corroborate 2 other data sets of breast cancer patients, as just over 44% of the women reported using the Internet after diagnosis. Sixteen months after diagnosis, the percentage of women using the Internet dropped slightly, but other chief sources dropped sharply at that time. The Internet continues to play an important role for cancer survivors after medical treatment has ended, and health professionals can use this knowledge to provide their patients with Internet advice.
Breast cancer; Internet; Internet use; Internet search
Many consumers use the Internet to find information about their medicines. It is widely acknowledged that health information on the Internet is of variable quality and therefore the search and appraisal skills of consumers are important for selecting and assessing this information. The way consumers choose and evaluate information on medicines on the Internet is important because it has been shown that written information on medicines can influence consumer attitudes to and use of medicines.
To explore consumer experiences in searching for and appraising Internet-based information on medicines.
Six focus groups (N = 46 participants) were conducted in metropolitan Sydney, Australia from March to May 2003 with consumers who had used the Internet for information on medicines. Verbatim transcripts of the group discussions were analyzed using a grounded theory approach.
All participants reported using a search engine to find information on medicines. Choice of search engine was determined by factors such as the workplace or educational environments, or suggestions by family or friends. Some participants found information solely by typing the medicine name (drug or brand name) into the search engine, while others searched using broader terms. Search skills ranged widely from more-advanced (using quotation marks and phrases) to less-than-optimal (such as typing in questions and full sentences). Many participants selected information from the first page of search results by looking for keywords and descriptions in the search results, and by looking for the source of the information as apparent in the URL. Opinions on credible sources of information on medicines varied with some participants regarding information by pharmaceutical companies as the "official" information on a medicine, and others preferring what they considered to be impartial sources such as governments, organizations, and educational institutions. It was clear that although most participants were skeptical of trusting information on the Internet, they had not paid conscious attention to how they selected information on medicines. Despite this, it was evident that participants viewed the Internet as an important source for information on medicines.
The results showed that there was a range of search and appraisal skills among participants, with many reporting a limited awareness of how they found and evaluated Internet-based information on medicines. Poor interpretation of written information on medicines has been shown to lead to anxiety and poor compliance to therapy. This issue is more important for Internet-based information since it is not subject to quality control and standardization as is written information on medicines. Therefore, there is a need for promoting consumer search and appraisal skills when using this information. Educating consumers in how to find and interpret Internet-based information on medicines may help them use their medicines in a safer and more-effective way.
Medicines; drugs; information; Internet; consumers; focus groups; qualitative research
Adolescents' access to health information on the Internet is partly a function of their ability to search for and find answers to their health-related questions. Adolescents may have unique health and computer literacy needs. Although many surveys, interviews, and focus groups have been utilized to understand the information-seeking and information-retrieval behavior of adolescents looking for health information online, we were unable to locate observations of individual adolescents that have been conducted in this context.
This study was designed to understand how adolescents search for health information using the Internet and what implications this may have on access to health information.
A convenience sample of 12 students (age 12-17 years) from 1 middle school and 2 high schools in southeast Michigan were provided with 6 health-related questions and asked to look for answers using the Internet. Researchers recorded 68 specific searches using software that captured screen images as well as synchronized audio recordings. Recordings were reviewed later and specific search techniques and strategies were coded. A qualitative review of the verbal communication was also performed.
Out of 68 observed searches, 47 (69%) were successful in that the adolescent found a correct and useful answer to the health question. The majority of sites that students attempted to access were retrieved directly from search engine results (77%) or a search engine's recommended links (10%); only a small percentage were directly accessed (5%) or linked from another site (7%). The majority (83%) of followed links from search engine results came from the first 9 results. Incorrect spelling (30 of 132 search terms), number of pages visited within a site (ranging from 1-15), and overall search strategy (eg, using a search engine versus directly accessing a site), were each important determinants of success. Qualitative analysis revealed that participants used a trial-and-error approach to formulate search strings, scanned pages randomly instead of systematically, and did not consider the source of the content when searching for health information.
This study provides a useful snapshot of current adolescent searching patterns. The results have implications for constructing realistic simulations of adolescent search behavior, improving distribution and usefulness of Web sites with health information relevant to adolescents, and enhancing educators' knowledge of what specific pitfalls students are likely to encounter.
Internet; adolescent; access to information; medical informatics; computer simulation; computer literacy; health education; search process; information seeking; information storage and retrieval
Despite the increasing penetration of the Internet and amount of online health information, there are significant barriers that limit its widespread adoption as a source of health information. One is the “digital divide,” with people of higher socioeconomic position (SEP) demonstrating greater access and usage compared to those from lower SEP groups. However, as the access gap narrows over time and more people use the Internet, a shift in research needs to occur to explore how one might improve Internet use as well as website design for a range of audiences. This is particularly important in the case of novice users who may not have the technical skills, experience, or social connections that could help them search for health information using the Internet. The focus of our research is to investigate the challenges in the implementation of a project to improve health information seeking among low SEP groups. The goal of the project is not to promote health information seeking as much as to understand the barriers and facilitators to computer and Internet use, beyond access, among members of lower SEP groups in an urban setting.
The purpose was to qualitatively describe participants’ self-identified barriers and facilitators to computer and Internet use during a 1-year pilot study as well as the challenges encountered by the research team in the delivery of the intervention.
Between August and November 2005, 12 low-SEP urban individuals with no or limited computer and Internet experience were recruited through a snowball sampling. Each participant received a free computer system, broadband Internet access, monthly computer training courses, and technical support for 1 year as the intervention condition. Upon completion of the study, participants were offered the opportunity to complete an in-depth semistructured interview. Interviews were approximately 1 hour in length and were conducted by the project director. The interviews were held in the participants’ homes and were tape recorded for accuracy. Nine of the 12 study participants completed the semistructured interviews. Members of the research team conducted a qualitative analysis based on the transcripts from the nine interviews using the crystallization/immersion method.
Nine of the 12 participants completed the in-depth interview (75% overall response rate), with three men and six women agreeing to be interviewed. Major barriers to Internet use that were mentioned included time constraints and family conflict over computer usage. The monthly training classes and technical assistance components of the intervention surfaced as the most important facilitators to computer and Internet use. The concept of received social support from other study members, such as assistance with computer-related questions, also emerged as an important facilitator to overall computer usage.
This pilot study offers important insights into the self-identified barriers and facilitators in computer and Internet use among urban low-SEP novice users as well as the challenges faced by the research team in implementing the intervention.
Digital divide; health information seeking; health disparities