Evaluating the Process of Online Health Information Searching: A Qualitative Approach to Exploring Consumer Perspectives

Background

The Internet is a common resource that patients and consumers use to access health-related information. Multiple practical, cultural, and socioeconomic factors influence why, when, and how people utilize this tool. Improving the delivery of health-related information necessitates a thorough understanding of users’ searching-related needs, preferences, and experiences. Although a wide body of quantitative research examining search behavior exists, qualitative approaches have been under-utilized and provide unique perspectives that may prove useful in improving the delivery of health information over the Internet.

Objective

We conducted this study to gain a deeper understanding of online health-searching behavior in order to inform future developments of personalizing information searching and content delivery.

Methods

We completed three focus groups with adult residents of Olmsted County, Minnesota, which explored perceptions of online health information searching. Participants were recruited through flyers and classifieds advertisements posted throughout the community. We audio-recorded and transcribed all focus groups, and analyzed data using standard qualitative methods.

Results

Almost all participants reported using the Internet to gather health information. They described a common experience of searching, filtering, and comparing results in order to obtain information relevant to their intended search target. Information saturation and fatigue were cited as main reasons for terminating searching. This information was often used as a resource to enhance their interactions with health care providers.

Conclusions

Many participants viewed the Internet as a valuable tool for finding health information in order to support their existing health care resources. Although the Internet is a preferred source of health information, challenges persist in streamlining the search process. Content providers should continue to develop new strategies and technologies aimed at accommodating diverse populations, vocabularies, and health information needs.     

Tailored and Integrated Web-Based Tools for Improving Psychosocial Outcomes of Cancer Patients: The DoTTI Development Framework

Background

Effective communication with cancer patients and their families about their disease, treatment options, and possible outcomes may improve psychosocial outcomes. However, traditional approaches to providing information to patients, including verbal information and written booklets, have a number of shortcomings centered on their limited ability to meet patient preferences and literacy levels. New-generation Web-based technologies offer an innovative and pragmatic solution for overcoming these limitations by providing a platform for interactive information seeking, information sharing, and user-centered tailoring.

Objective

The primary goal of this paper is to discuss the advantages of comprehensive and iterative Web-based technologies for health information provision and propose a four-phase framework for the development of Web-based information tools.

Methods

The proposed framework draws on our experience of constructing a Web-based information tool for hematological cancer patients and their families. The framework is based on principles for the development and evaluation of complex interventions and draws on the Agile methodology of software programming that emphasizes collaboration and iteration throughout the development process.

Results

The DoTTI framework provides a model for a comprehensive and iterative approach to the development of Web-based informational tools for patients. The process involves 4 phases of development: (1) Design and development, (2) Testing early iterations, (3) Testing for effectiveness, and (4) Integration and implementation. At each step, stakeholders (including researchers, clinicians, consumers, and programmers) are engaged in consultations to review progress, provide feedback on versions of the Web-based tool, and based on feedback, determine the appropriate next steps in development.

Conclusions

This 4-phase framework is evidence-informed and consumer-centered and could be applied widely to develop Web-based programs for a diverse range of diseases.     

Information-Seeking at a Caregiving Website: A Qualitative Analysis

Background

The Internet is widely used for health information, yet little is known about the online activity of family caregivers of elders, a rapidly growing group. In order to better understand the online information-seeking activity of “e-caregivers” and other visitors at a caregiving website, we undertook a qualitative analysis of survey data from a website marketed as a comprehensive resource for adults caring for aging parents.

Objective

The objectives were to better understand what types of information are sought by those visiting a website focused on elder-care issues and to identify overarching themes that might inform future development of Internet resources related to caregiving and aging.

Methods

From March 2008 to March 2009, a 5-question pop-up survey was offered 9662 times and completed 2161 times. For 1838 respondents, included was a free text answer to the question "What were you looking for?” and 1467 offered relevant and detailed responses. The survey also asked about satisfaction with the site, gender of the respondent, and relationship to the individual being cared for. Content analysis was used to develop a coding dictionary, to code responses into information-seeking categories, and to identify overarching themes.

Results

Of the respondents (76% of whom were female), 50% indicated they were caring for parents, 17% for themselves only, and 31% for others. Over half (57%) reported finding what they were looking for, and 46% stated they were extremely likely to recommend the website. Frequently mentioned information-seeking categories included “health information,” “practical caregiving,” and “support.” Respondents also requested information related to housing, legal, insurance, and financial issues. Many responses referred to multiple comorbid conditions and complex caregiving situations. Overarching themes included (1) a desire for assistance with a wide range of practical skills and information and (2) help interpreting symptoms and behavior, such as knowing what life impacts to expect over the course of a health condition or treatment.

Conclusion

Visitors to a website targeting adults caring for aging parents reported seeking both general information on caregiving and specific assistance with the complex custodial, medical, emotional, and financial aspects of caregiving. Visitors requested both information to build caregiving skills as well as assistance in interpreting and knowing what to expect from symptoms, health conditions, and changes in behavior and relationships. Many desired communication with and support from other caregivers. Health care providers and eHealth developers should expect that many caregivers of elders are using the Internet as a resource. Further research and development is needed to fully realize the Internet’s potential for education and support of caregivers.     

Health Domains for Sale: The Need for Global Health Internet Governance

A debate on Internet governance for health, or “eHealth governance”, is emerging with the impending award of a new dot-health (.health) generic top-level domain name (gTLD) along with a host of other health-related domains. This development is critical as it will shape the future of the health Internet, allowing largely unrestricted use of .health second-level domain names by future registrants, raising concerns about the potential for privacy, use and marketing of health-related information, credibility of online health content, and potential for Internet fraud and abuse. Yet, prospective .health gTLD applicants do not provide adequate safeguards for use of .health or related domains and have few or no ties to the global health community. If approved, one of these for-profit corporate applicants would effectively control the future of the .health address on the Internet with arguably no active oversight from important international public health stakeholders. This would represent a lost opportunity for the public health, medical, and broader health community in establishing a trusted, transparent and reliable source for health on the Internet. Countries, medical associations, civil society, and consumer advocates have objected to these applications on grounds that they do not meet the public interest. We argue that there is an immediate need for action to postpone awarding of the .health gTLD and other health-related gTLDs to address these concerns and ensure the appropriate development of sound eHealth governance rules, principles, and use. This would support the crucial need of ensuring access to quality and evidence-based sources of health information online, as well as establishing a safe and reliable space on the Internet for health. We believe, if properly governed, .health and other domains could represent such a promise in the future.     

The Impact of Internet Health Information on Patient Compliance: A Research Model and an Empirical Study

Background

Patients have been increasingly seeking and using Internet health information to become more active in managing their own health in a partnership with their physicians. This trend has both positive and negative effects on the interactions between patients and their physicians. Therefore, it is important to understand the impact that the increasing use of Internet health information has on the patient-physician relationship and patients’ compliance with their treatment regimens.

Objective

This study examines the impact of patients’ use of Internet health information on various elements that characterize the interactions between a patient and her/his physician through a theoretical model based on principal-agent theory and the information asymmetry perspective.

Methods

A survey-based study consisting of 225 participants was used to validate a model through various statistical techniques. A full assessment of the measurement model and structural model was completed in addition to relevant post hoc analyses.

Results

This research revealed that both patient-physician concordance and perceived information asymmetry have significant effects on patient compliance, with patient-physician concordance exhibiting a considerably stronger relationship. Additionally, both physician quality and Internet health information quality have significant effects on patient-physician concordance, with physician quality exhibiting a much stronger relationship. Finally, only physician quality was found to have a significant impact on perceived information asymmetry, whereas Internet health information quality had no impact on perceived information asymmetry.

Conclusions

Overall, this study found that physicians can relax regarding their fears concerning patient use of Internet health information because physician quality has the greatest impact on patients and their physician coming to an agreement on their medical situation and recommended treatment regimen as well as patient’s compliance with their physician’s advice when compared to the impact that Internet health information quality has on these same variables. The findings also indicate that agreement between the patient and physician on the medical situation and treatment is much more important to compliance than the perceived information gap between the patient and physician (ie, the physician having a higher level of information in comparison to the patient). In addition, the level of agreement between a patient and their physician regarding the medical situation is more reliant on the perceived quality of their physician than on the perceived quality of Internet health information used. This research found that only the perceived quality of the physician has a significant relationship with the perceived information gap between the patient and their physician and the quality of the Internet health information has no relationship with this perceived information gap.     

Evaluating a Web-Based Clinical Decision Support System for Language Disorders Screening in a Nursery School

Background

Early and effective identification of developmental disorders during childhood remains a critical task for the international community. The second highest prevalence of common developmental disorders in children are language delays, which are frequently the first symptoms of a possible disorder.

Objective

This paper evaluates a Web-based Clinical Decision Support System (CDSS) whose aim is to enhance the screening of language disorders at a nursery school. The common lack of early diagnosis of language disorders led us to deploy an easy-to-use CDSS in order to evaluate its accuracy in early detection of language pathologies. This CDSS can be used by pediatricians to support the screening of language disorders in primary care.

Methods

This paper details the evaluation results of the “Gades” CDSS at a nursery school with 146 children, 12 educators, and 1 language therapist. The methodology embraces two consecutive phases. The first stage involves the observation of each child’s language abilities, carried out by the educators, to facilitate the evaluation of language acquisition level performed by a language therapist. Next, the same language therapist evaluates the reliability of the observed results.

Results

The Gades CDSS was integrated to provide the language therapist with the required clinical information. The validation process showed a global 83.6% (122/146) success rate in language evaluation and a 7% (7/94) rate of non-accepted system decisions within the range of children from 0 to 3 years old. The system helped language therapists to identify new children with potential disorders who required further evaluation. This process will revalidate the CDSS output and allow the enhancement of early detection of language disorders in children. The system does need minor refinement, since the therapists disagreed with some questions from the CDSS knowledge base (KB) and suggested adding a few questions about speech production and pragmatic abilities. The refinement of the KB will address these issues and include the requested improvements, with the support of the experts who took part in the original KB development.

Conclusions

This research demonstrated the benefit of a Web-based CDSS to monitor children’s neurodevelopment via the early detection of language delays at a nursery school. Current next steps focus on the design of a model that includes pseudo auto-learning capacity, supervised by experts.     

Predictors of eHealth Usage: Insights on The Digital Divide From the Health Information National Trends Survey 2012

Background

Recent eHealth developments have elevated the importance of assessing the extent to which technology has empowered patients and improved health, particularly among the most vulnerable populations. With noted disparities across racial and social groups in chronic health outcomes, such as cancer, obesity, and diabetes, it is essential that researchers examine any differences in the implementation, uptake, and impact of eHealth strategies across groups that bear a disproportionate burden of disease.

Objective

The goal was to examine eHealth use by sociodemographic factors, such as race/ethnicity, socioeconomic status (SES), age, and sex.

Methods

We drew data from National Cancer Institute’s 2012 Health Information National Trends Survey (HINTS) (N=3959) which is publicly available online. We estimated multivariable logistic regression models to assess sociodemographic predictors of eHealth use among adult Internet users (N=2358) across 3 health communication domains (health care, health information–seeking, and user-generated content/sharing).

Results

Among online adults, we saw no evidence of a digital use divide by race/ethnicity. However, there were significant differences in use by SES, particularly for health care and health information–seeking items. Patients with lower levels of education had significantly lower odds of going online to look for a health care provider (high school or less: OR 0.50, 95% CI 0.33-0.76) using email or the Internet to communicate with a doctor (high school or less: OR 0.46, 95% CI 0.29-0.72), tracking their personal health information online (high school or less: OR 0.53, 95% CI 0.32-0.84), using a website to help track diet, weight, and physical activity (high school or less: OR 0.64, 95% CI 0.42-0.98; some college: OR 0.67, 95% CI 0.49-0.93), or downloading health information to a mobile device (some college: OR 0.54, 95% CI 0.33-0.89). Being female was a consistent predictor of eHealth use across health care and user-generated content/sharing domains, whereas age was primarily influential for health information–seeking.

Conclusions

This study illustrates that lower SES, older, and male online US adults were less likely to engage in a number of eHealth activities compared to their counterparts. Future studies should assess issues of health literacy and eHealth literacy and their influence on eHealth engagement across social groups. Clinical care and public health communication efforts attempting to leverage Web 2.0 and 3.0 platforms should acknowledge differential eHealth usage to better address communication inequalities and persistent disparities in health.     

Using the Internet for Health-Related Activities: Findings From a National Probability Sample

Background

eHealth tools on the Internet have the potential to help people manage their health and health care. However, little is known about the distribution and use of different kinds of eHealth tools across the population or within population subgroups.

Objective

The purpose of this study was to examine the prevalence and predictors of participation in specific online health-related activities.

Methods

A secondary data analysis of the National Cancer Institute’s Health Information National Trends Survey (HINTS) 2005 was conducted to study three online behaviors among Internet users (n = 3244): searching for health information for oneself, participating in a support group for those with similar health or medical conditions, and purchasing medicine or vitamins.

Results

A total of 58% of Internet users reported searching for health information for themselves, 3.8% used online support groups, and 12.8% bought medicine or vitamins online in the past year. Multivariate analysis found that those seeking health information were more likely to be women (OR = 2.23, 95% CI = 1.60, 3.09), have cable or satellite Internet connections (OR = 1.73, 95% CI = 1.22, 2.45) or DSL connections (OR = 1.94, 95% CI = 1.36, 2.76), have Internet access from work (OR = 2.43, 95% CI = 1.27, 4.67) or from home and work (OR = 1.73, 95% CI = 1.31, 2.30), and report more hours of weekday Internet use (OR = 4.12, 95% CI = 2.41, 7.07). Those with a high school education or less (OR = 0.44, 95% CI = 0.31, 0.63) and those with some college (OR = 0.66, 95% CI = 0.49, 0.89) were less likely to search for health information. Online support groups were more likely to be used by those with “fair” health (OR = 3.28, 95% CI = 1.21, 8.92) and “poor” health (OR = 5.98, 95% CI = 1.49, 24.07) and those with lower incomes (OR = 2.64, 95% CI = 1.09, 6.41) and less likely to be used by those with Internet access both at home and work (OR = 0.56, 95% CI = 0.35, 0.90). Those who were age 35-49 (OR = 2.16, 95% CI = 1.43, 3.26), age 50-64 (OR = 2.44, 95% CI = 1.53, 3.89), and age 65-74 (OR = 2.18, 95% CI = 1.30, 3.67) and those who were married (OR = 1.93, 95% CI = 1.13, 3.30) were more likely to purchase medicine or vitamins online.

Conclusions

The Internet was most widely used as a health information resource, with less participation in the purchase of medicine and vitamins and in online support groups. Results suggest that modifying survey questions to better capture forms of online support and medications purchased could provide greater understanding of the nature of participation in these activities.     

Evaluation of a Web-based intervention providing tailored advice for self-management of minor respiratory symptoms: exploratory randomized controlled trial

Background

There has been relatively little research on the role of web-based support for self-care in the management of minor, acute symptoms, in contrast to the wealth of recent research into Internet interventions to support self-management of long-term conditions.

Objective

This study was designed as an evaluation of the usage and effects of the “Internet Doctor” website providing tailored advice on self-management of minor respiratory symptoms (eg, cough, sore throat, fever, runny nose), in preparation for a definitive trial of clinical effectiveness. The first aim was to evaluate the effects of using the Internet Doctor webpages on patient enablement and use of health services, to test whether the tailored, theory-based advice provided by the Internet Doctor was superior to providing a static webpage providing the best existing patient information (the control condition). The second aim was to gain an understanding of the processes that might mediate any change in intentions to consult the doctor, by comparing changes in relevant beliefs and illness perceptions in the intervention and control groups, and by analyzing usage of the Internet Doctor webpages and predictors of intention change.

Methods

Participants (N = 714) completed baseline measures of beliefs about their symptoms and self-care online, and were then automatically randomized to the Internet Doctor or control group. These measures were completed again by 332 participants after 48 hours. Four weeks later, 214 participants completed measures of enablement and health service use.

Results

The Internet Doctor resulted in higher levels of satisfaction than the control information (mean 6.58 and 5.86, respectively; P = .002) and resulted in higher levels of enablement a month later (median 3 and 2, respectively; P = .03). Understanding of illness improved in the 48 hours following use of the Internet Doctor webpages, whereas it did not improve in the control group (mean change from baseline 0.21 and -0.06, respectively, P = .05). Decline in intentions to consult the doctor between baseline and follow-up was predicted by age (beta = .10, P= .003), believing before accessing the website that consultation was necessary for recovery (beta = .19, P < .001), poor understanding of illness (beta = .11, P = .004), emotional reactions to illness (beta = .15, P <.001), and use of the Diagnostic section of the Internet Doctor website (beta = .09, P = .007).

Conclusions

Our findings provide initial evidence that tailored web-based advice could help patients self-manage minor symptoms to a greater extent. These findings constitute a sound foundation and rationale for future research. In particular, our study provides the evidence required to justify carrying out much larger trials in representative population samples comparing tailored web-based advice with routine care, to obtain a definitive evaluation of the impact on self-management and health service use.     

What E-patients Want From the Doctor-Patient Relationship: Content Analysis of Posts on Discussion Boards

Background

People with long-term conditions are encouraged to take control and ownership of managing their condition. Interactions between health care staff and patients become partnerships with sharing of expertise. This has changed the doctor-patient relationship and the division of roles and responsibilities that traditionally existed, but what each party expects from the other may not always be clear. Information that people with long-term conditions share on Internet discussion boards can provide useful insights into their expectations of health care staff. This paper reports on a small study about the expectations that people with a long-term condition (diabetes) have of their doctors using information gleaned from Internet discussion boards.

Objective

The aim of this study was to ascertain what people with diabetes who use Internet discussion forums want from their doctors. The study objectives were to identify what people with diabetes (1) consider their role in condition management, (2) consider their doctor’s role in managing their condition, (3) see as positive elements of their interactions with medical staff, and (4) find problematic in their interactions with medical staff.

Methods

The study used qualitative methodology to explore the experiences, views, and perceptions of individuals participating on 4 Internet message boards. Posts made on the discussion boards were analyzed using the principles of qualitative content analysis. The meanings of sections of data were noted using codes that were developed inductively; those with similar codes were merged into subcategories and related subcategories were combined to form categories.

Results

The key themes identified in the study were ownership of condition management, power issues between people with long-term conditions and doctors, and ways in which people seek to manage their doctors.

Conclusions

People with diabetes valued doctors who showed respect for them and their knowledge, and were willing to listen and openly discuss their options. Patients felt that they could and should take responsibility for and control of their day-to-day disease management. They saw doctors as having a role in this process, but when this was lacking, many people felt able to use alternative means to achieve their goal, although the doctor’s function in terms of gatekeeping resources could create difficulties for them in this respect.     

Health literacy in the eHealth era: A systematic review of the literature

ObjectivesThis study aimed to identify studies on online health service use by people with limited health literacy, as the findings could provide insights into how health literacy has been, and should be, addressed in the eHealth era.MethodsTo identify the relevant literature published since 2010, we performed four rounds of selection—database selection, keyword search, screening of the titles and abstracts, and screening of full texts. This process produced a final of 74 publications.ResultsThe themes addressed in the 74 publications fell into five categories: evaluation of health-related content, development and evaluation of eHealth services, development and evaluation of health literacy measurement tools, interventions to improve health literacy, and online health information seeking behavior.ConclusionBarriers to access to and use of online health information can result from the readability of content and poor usability of eHealth services. We need new health literacy screening tools to identify skills for adequate use of eHealth services. Mobile apps hold great potential for eHealth and mHealth services tailored to people with low health literacy.Practice implicationsEfforts should be made to make eHealth services easily accessible to low-literacy individuals and to enhance individual health literacy through educational programs.     

Acceptance of Internet-Based Health Care Services Among Households in Poland: Secondary Analysis of a Population-Based Survey

Background

Polish society is benefiting from growing access to the Internet, but the use of advanced e-services is still limited. The provision of Internet-based health services depends not only on the penetration of the Internet into society, but also on the acceptance of this technology by potential users.

Objective

The main objective of this study was focused on the assessment of predictors of acceptance of Internet use for provision of health services (eg, sociodemographic status, the use of information technologies, and consumption of health care services) among households in Poland.

Methods

The study was based on a secondary analysis of the dataset from the 2011 Social Diagnosis survey (a biannual survey conducted since 2001 about economic and non-economic aspects of household and individual living conditions in Poland). Analysis of the questionnaire results focused on the situations of the households included in the study. The predictors for 2 outcome variables describing the acceptance of households for Internet use for provision of a full health care service, or at least access to information and download of required forms, were assessed using multivariate logistic regression.

Results

After excluding those households that would not consider the use of health care services or for which predictor variables assumed missing values, the final analyses were conducted on data from 8915 households. Acceptance of the use of the Internet for provision of full health care services in Polish households was significantly higher among households in urban locations with ≥ 200,000 inhabitants than among households in rural areas; it was also higher with salaried employment as the source of income than with self-employment in agriculture (odds ratio [OR] = 0.53, 95% CI 0.40 - 0.70), retirement pension (OR = 0.46, 95% CI 0.39 - 0.54), disability pension (OR = 0.48, 95% CI 0.34 - 0.68), or with several simultaneous income sources (OR = 0.66; 95% CI 0.57 - 0.79). Furthermore, acceptance of Internet-based health care was higher in households with a higher monthly net income per capita (OR = 2.11, 95% CI 1.75 - 2.53 for households from the lowest and the highest income interval), among households with > 1 child aged < 15 years (OR = 1.38, 95% CI 1.20 - 1.59), among households with at least some books (with OR = 3.33, 95% CI 2.39 - 4.64 for household with no books and those with over 500 books). Acceptance was also higher in households with a computer (OR = 1.86, 95% CI 1.35 - 2.56), Internet access (OR = 1.95, 95% CI 1.37 - 2.76), and Internet access for a longer duration (OR = 1.36, 95% CI 1.06 - 1.75 and OR = 1.81, 95% CI 1.40 - 2.33 for households with access < 1 year versus those with access for 1-5 years and > 5 years, respectively). Greater self-declared confidence in using technology was also associated with higher acceptance of the Internet for health care services (OR = 2.94, 95% CI 2.21 - 3.91 for the least confident households versus those with the highest confidence). Furthermore, recent use of health care services increased acceptance of using the Internet for at least some health-related services (OR = 1.49, 95% CI 1.16 - 1.91), but not for full provision of online health care services (OR = 1.20, 95% CI 0.92 - 1.55). Neither the hospitalization of a member of a household nor the opinion about satisfying health care needs of a household affected the degree of acceptance.

Conclusions

The acceptance of health care services through the Internet is higher in households from larger cities, with stable income from an employee salary, as well as with higher income levels per capita. Furthermore, general computer and Internet use in the household influenced the perception of eHealth. Paradoxically, the use of health care services or the level of satisfaction with the coverage of the household’s health needs has a limited influence on acceptance of Internet-based health care services.     

An AIDS-Denialist Online Community on a Russian Social Networking Service: Patterns of Interactions With Newcomers and Rhetorical Strategies of Persuasion

Background

The rise of social media proved to be a fertile ground for the expansion of the acquired immune deficiency syndrome (AIDS)-denialist movement (in the form of online communities). While there is substantial literature devoted to disproving AIDS-denialist views, there is a lack of studies exploring AIDS-denialists online communities that interact with an external environment.

Objective

We explored three research areas: (1) reasons for newcomers to come to an AIDS-denialist community, (2) the patterns of interactions of the community with the newcomers, and (3) rhetorical strategies that denialists use for persuasion in the veracity of their views.

Methods

We studied the largest AIDS-denialist community on one of the most popular social networking services in Russia. We used netnography as a method for collecting data for qualitative analysis and observed the community for 9 months (at least 2-3 times a week). While doing netnography, we periodically downloaded community discussions. In total, we downloaded 4821 posts and comments for analysis. Grounded theory approach was used for data analysis.

Results

Most users came to the community for the following reasons: their stories did not fit the unitary picture of AIDS disease progression translated by popular medical discourse, health problems, concern about HIV-positive tests, and desire to dissuade community members from false AIDS beliefs. On the basis of strength in AIDS-denialist beliefs, we constructed a typology of the newcomers consisting of three ideal-typical groups: (1) convinced: those who already had become denialists before coming to the group, (2) doubters: those who were undecided about the truth of either human immunodeficiency virus (HIV) science theory or AIDS-denialist theory, and (3) orthodox: those who openly held HIV science views. Reception of a newcomer mainly depended on the newcomer’s belief status. Reception was very warm for the convinced, cold or slightly hostile for the doubters, and extremely hostile or derisive for the orthodox. We identified seven main rhetorical strategies of persuasion used by the denialists on the “undecided”.

Conclusions

Contrary to the widespread public health depiction of AIDS denialists as totally irrational, our study suggests that some of those who become AIDS denialists have sufficiently reasonable grounds to suspect that “something is wrong” with scientific theory, because their personal experience contradicts the unitary picture of AIDS disease progression. Odd and inexplicable practices of some AIDS centers only fuel these people’s suspicions. We can conclude that public health practitioners’ practices may play a role in generating AIDS-denialist sentiments. In interactions with the newcomers, the experienced community members highlighted the importance of personal autonomy and freedom of choice in decision making consistent with the consumerist ideology of health care. The study findings suggest that health care workers should change a one-size-fits-all mode of counseling for a more complex and patient-tailored approach, allowing for diversity of disease progression scenarios and scientific uncertainty.     

The Impact of Search Engine Selection and Sorting Criteria on Vaccination Beliefs and Attitudes: Two Experiments Manipulating Google Output

Background

During the past 2 decades, the Internet has evolved to become a necessity in our daily lives. The selection and sorting algorithms of search engines exert tremendous influence over the global spread of information and other communication processes.

Objective

This study is concerned with demonstrating the influence of selection and sorting/ranking criteria operating in search engines on users’ knowledge, beliefs, and attitudes of websites about vaccination. In particular, it is to compare the effects of search engines that deliver websites emphasizing on the pro side of vaccination with those focusing on the con side and with normal Google as a control group.

Method

We conducted 2 online experiments using manipulated search engines. A pilot study was to verify the existence of dangerous health literacy in connection with searching and using health information on the Internet by exploring the effect of 2 manipulated search engines that yielded either pro or con vaccination sites only, with a group receiving normal Google as control. A pre-post test design was used; participants were American marketing students enrolled in a study-abroad program in Lugano, Switzerland. The second experiment manipulated the search engine by applying different ratios of con versus pro vaccination webpages displayed in the search results. Participants were recruited from Amazon’s Mechanical Turk platform where it was published as a human intelligence task (HIT).

Results

Both experiments showed knowledge highest in the group offered only pro vaccination sites (Z=–2.088, P=.03; Kruskal-Wallis H test [H₅]=11.30, P=.04). They acknowledged the importance/benefits (Z=–2.326, P=.02; H₅=11.34, P=.04) and effectiveness (Z=–2.230, P=.03) of vaccination more, whereas groups offered antivaccination sites only showed increased concern about effects (Z=–2.582, P=.01; H₅=16.88, P=.005) and harmful health outcomes (Z=–2.200, P=.02) of vaccination. Normal Google users perceived information quality to be positive despite a small effect on knowledge and a negative effect on their beliefs and attitudes toward vaccination and willingness to recommend the information (χ² ₅=14.1, P=.01). More exposure to antivaccination websites lowered participants’ knowledge (J=4783.5, z=−2.142, P=.03) increased their fear of side effects (J=6496, z=2.724, P=.006), and lowered their acknowledgment of benefits (J=4805, z=–2.067, P=.03).

Conclusion

The selection and sorting/ranking criteria of search engines play a vital role in online health information seeking. Search engines delivering websites containing credible and evidence-based medical information impact positively Internet users seeking health information. Whereas sites retrieved by biased search engines create some opinion change in users. These effects are apparently independent of users’ site credibility and evaluation judgments. Users are affected beneficially or detrimentally but are unaware, suggesting they are not consciously perceptive of indicators that steer them toward the credible sources or away from the dangerous ones. In this sense, the online health information seeker is flying blind.     

Wikipedia and Medicine: Quantifying Readership,Editors, and the Significance of Natural Language

BackgroundWikipedia is a collaboratively edited encyclopedia. One of the most popular websites on the Internet, it is known to be a frequently used source of health care information by both professionals and the lay public.ObjectiveThis paper quantifies the production and consumption of Wikipedia’s medical content along 4 dimensions. First, we measured the amount of medical content in both articles and bytes and, second, the citations that supported that content. Third, we analyzed the medical readership against that of other health care websites between Wikipedia’s natural language editions and its relationship with disease prevalence. Fourth, we surveyed the quantity/characteristics of Wikipedia’s medical contributors, including year-over-year participation trends and editor demographics.MethodsUsing a well-defined categorization infrastructure, we identified medically pertinent English-language Wikipedia articles and links to their foreign language equivalents. With these, Wikipedia can be queried to produce metadata and full texts for entire article histories. Wikipedia also makes available hourly reports that aggregate reader traffic at per-article granularity. An online survey was used to determine the background of contributors. Standard mining and visualization techniques (eg, aggregation queries, cumulative distribution functions, and/or correlation metrics) were applied to each of these datasets. Analysis focused on year-end 2013, but historical data permitted some longitudinal analysis.ResultsWikipedia’s medical content (at the end of 2013) was made up of more than 155,000 articles and 1 billion bytes of text across more than 255 languages. This content was supported by more than 950,000 references. Content was viewed more than 4.88 billion times in 2013. This makes it one of if not the most viewed medical resource(s) globally. The core editor community numbered less than 300 and declined over the past 5 years. The members of this community were half health care providers and 85.5% (100/117) had a university education.ConclusionsAlthough Wikipedia has a considerable volume of multilingual medical content that is extensively read and well-referenced, the core group of editors that contribute and maintain that content is small and shrinking in size.     

Exposure to a Patient-Centered,Web-Based Intervention for Managing Cancer Symptom and Quality of Life Issues: Impact on Symptom Distress

Background

Effective eHealth interventions can benefit a large number of patients with content intended to support self-care and management of both chronic and acute conditions. Even though usage statistics are easily logged in most eHealth interventions, usage or exposure has rarely been reported in trials, let alone studied in relationship to effectiveness.

Objective

The intent of the study was to evaluate use of a fully automated, Web-based program, the Electronic Self Report Assessment-Cancer (ESRA-C), and how delivery and total use of the intervention may have affected cancer symptom distress.

Methods

Patients at two cancer centers used ESRA-C to self-report symptom and quality of life (SxQOL) issues during therapy. Participants were randomized to ESRA-C assessment only (control) or the ESRA-C intervention delivered via the Internet to patients’ homes or to a tablet at the clinic. The intervention enabled participants to self-monitor SxQOL and receive self-care education and customized coaching on how to report concerns to clinicians. Overall and voluntary intervention use were defined as having ≥2 exposures, and one non-prompted exposure to the intervention, respectively. Factors associated with intervention use were explored with Fisher’s exact test. Propensity score matching was used to select a sample of control participants similar to intervention participants who used the intervention. Analysis of covariance (ANCOVA) was used to compare change in Symptom Distress Scale (SDS-15) scores from pre-treatment to end-of-study by groups in the matched sample.

Results

Radiation oncology participants used the intervention, overall and voluntarily, more than medical oncology and transplant participants. Participants who were working and had more than a high school education voluntarily used the intervention more. The SDS-15 score was reduced by an estimated 1.53 points (P=.01) in the intervention group users compared to the matched control group.

Conclusions

The intended effects of a Web-based, patient-centered intervention on cancer symptom distress were modified by intervention use frequency. Clinical and personal demographics influenced voluntary use.

Trial Registration

Clinicaltrials.gov {"type":"clinical-trial","attrs":{"text":"NCT00852852","term_id":"NCT00852852"}}NCT00852852; http://clinicaltrials.gov/ct2/show/{"type":"clinical-trial","attrs":{"text":"NCT00852852","term_id":"NCT00852852"}}NCT00852852 (Archived by WebCite at http://www.webcitation.org/6YwAfwWl7).     

Parents Seeking Health-Related Information on the Internet: Cross-Sectional Study

Background

The Internet represents an increasingly common source of health-related information, and it has facilitated a wide range of interactions between people and the health care delivery system.

Objective

To establish the extent of Internet access and use to gather information about health topics and the potential implications to health care among the adult population in Calabria region, Italy.

Methods

This cross-sectional study was conducted from April to June 2012. The sample consisted of 1544 adults aged ≥18 years selected among parents of public school students in the geographic area of Catanzaro in southern Italy. A 2-stage sample design was planned. A letter summarizing the purpose of the study, an informed consent form, and a questionnaire were given to selected student to deliver to their parents. The final survey was formulated in 5 sections: (1) sociodemographic characteristics, (2) information about chronic diseases and main sources of health care information, (3) information about Internet use, (4) data about the effects of using the Internet to search for health information, and (5) knowledge and use of social networks.

Results

A total of 1039 parents completed the questionnaire, with a response rate equivalent to 67.29%. Regarding health-related information types, 84.7% of respondents used the Internet to search for their own medical conditions or those of family members or relatives, 40.7% of parents reported looking for diet, body weight, or physical activity information, 29.6% searched for vaccines, 28.5% for screening programs, and 16.5% for smoking cessation tools and products. The results of the multiple logistic regression analysis showed that parents who looked for health-related information on the Internet were more likely to be female (OR 1.53, 95% CI 1.05-2.25), with a high school diploma (OR 1.69, 95% CI 1.02-2.81) or college degree (OR 2.14, 95% CI 1.21-3.78), younger aged (OR 0.96, 95% CI 0.94-0.99), with chronic conditions (OR 1.94, 95% CI 1.17-3.19), not satisfied with their general practitioner’s health-related information (OR 0.6, 95% CI 0.38-0.97), but satisfied with information from scientific journals (OR 1.99, 95% CI 1.33-2.98).

Conclusions

Our analyses provide important insights into Internet use and health information–seeking behaviors of the Italian population and contribute to the evidence base for health communication planning. Health and public health professionals should educate the public about acquiring health information online and how to critically appraise it, and provide tools to navigate to the highest-quality information. The challenge to public health practice is to facilitate the health-promoting use of the Web among consumers in conjunction with their health care providers.     

Medium-Term Effectiveness of a Comprehensive Internet-Based and Patient-Specific Telerehabilitation Program With Text Messaging Support for Cardiac Patients: Randomized Controlled Trial

BackgroundCardiac telerehabilitation has been introduced as an adjunct or alternative to conventional center-based cardiac rehabilitation to increase its long-term effectiveness. However, before large-scale implementation and reimbursement in current health care systems is possible, well-designed studies on the effectiveness of this new additional treatment strategy are needed.ObjectiveThe aim of this trial was to assess the medium-term effectiveness of an Internet-based, comprehensive, and patient-tailored telerehabilitation program with short message service (SMS) texting support for cardiac patients.MethodsThis multicenter randomized controlled trial consisted of 140 cardiac rehabilitation patients randomized (1:1) to a 24-week telerehabilitation program in combination with conventional cardiac rehabilitation (intervention group; n=70) or to conventional cardiac rehabilitation alone (control group; n=70). In the telerehabilitation program, initiated 6 weeks after the start of ambulatory rehabilitation, patients were stimulated to increase physical activity levels. Based on registered activity data, they received semiautomatic telecoaching via email and SMS text message encouraging them to gradually achieve predefined exercise training goals. Patient-specific dietary and/or smoking cessation advice was also provided as part of the telecoaching. The primary endpoint was peak aerobic capacity (VO₂ peak). Secondary endpoints included accelerometer-recorded daily step counts, self-assessed physical activities by International Physical Activity Questionnaire (IPAQ), and health-related quality of life (HRQL) assessed by the HeartQol questionnaire at baseline and at 6 and 24 weeks.ResultsMean VO₂ peak increased significantly in intervention group patients (n=69) from baseline (mean 22.46, SD 0.78 mL/[min*kg]) to 24 weeks (mean 24.46, SD 1.00 mL/[min*kg], P<.01) versus control group patients (n=70), who did not change significantly (baseline: mean 22.72, SD 0.74 mL/[min*kg]; 24 weeks: mean 22.15, SD 0.77 mL/[min*kg], P=.09). Between-group analysis of aerobic capacity confirmed a significant difference between the intervention group and control group in favor of the intervention group (P<.001). At 24 weeks, self-reported physical activity improved more in the intervention group compared to the control group (P=.01) as did the global HRQL score (P=.01).ConclusionsThis study showed that an additional 6-month patient-specific, comprehensive telerehabilitation program can lead to a bigger improvement in both physical fitness (VO₂ peak) and associated HRQL compared to center-based cardiac rehabilitation alone. These results are supportive in view of possible future implementation in standard cardiac care.