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Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Genetic Information Seeking
  5. Quality of Information
  6. Method
  7. Results
  8. Discussion
  9. References

Health consumers have become increasingly interested in genetic information. This increasing consumer interest in genetic information is coupled with a growing trend in consumer uses of the Internet for health-related purposes. Also, the number of websites providing health-related information has grown dramatically. In the realm of genetics, the National Libraries of Medicine launched the Genetic Home Reference (GHR) web site with the goal of serving as an information resource on genetics for consumers. In this project, we examine the role of quality perceptions on attitude and behavioral intentions toward GHR. The study reveals that quality plays a key role in determining attitude and behavioral intentions toward GHR. The results provide the basis for making recommendations for health-related information portals.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Genetic Information Seeking
  5. Quality of Information
  6. Method
  7. Results
  8. Discussion
  9. References

The Internet has had a significant impact on the nature and type of health information processing online.1–4 Consumers are increasingly seeking health information online, including seeking out information about inherited disorders.5 This growth in consumer health information seeking online has been coupled with an exponential growth in the number of e-health websites that are available to consumers.1–4 Online health information searches for genetic information have been triggered by the Human Genome Project, with increasing consumer interest in genetic information and heightened awareness of the role of genetic information in delivering optimal healthcare solutions. This increasing consumer interest in health information, and genetic information particularly, has been accompanied by the acknowledgement in the expert community that genetic information is complex and needs to be delivered in ways that make complex genetic information accessible to the public, and serves the public's genetic information needs.

It was with the goal of addressing this specific challenge of offering comprehensible genetic information to consumers that the Lister Hill National Center for Biomedical Communications (LHNCBC), part of the National Library of Medicine (NLM), launched the Genetics Home Reference (GHR) portal, a Web-based resource for the general public.5 GHR covers a wide range of information starting from lay-level questions to the details of gene function and structure. In this manuscript, we specifically explore consumer uses of quality criteria of GHR, and the ways in which quality perceptions influence attitude and behavioral intention toward GHR.1,2,6 Quality of e-health information has become particularly relevant in recent debates on online health information because of the widespread accessibility to posting health information online, because of the complexity of genetic information, and because of the large-scale variance in the quality of health information available on the Internet. This is a study of the role of quality evaluation in the realm of attitude toward GHR, website-specific behavioral intentions toward GHR and general behavioral intentions in the realm of genetic information. It contributes to the current literature on genetic information seeking by delving into the combined role of key quality indicators in predicting attitudinal and behavioral responses toward the website. The practical value of such an exploration lies in developing guidelines for web managers/editors regarding strategies for improving the quality of health websites. The literature review in the next section will first provide an overview of genetic information seeking, followed by the literature on quality of e-health information.

Genetic Information Seeking

  1. Top of page
  2. Abstract
  3. Introduction
  4. Genetic Information Seeking
  5. Quality of Information
  6. Method
  7. Results
  8. Discussion
  9. References

With the mapping of the human genome, there has developed an increased interest in genomics, or “the codification of an organism through the set of genes, chemical structures that exist as actual components of the body.”7 More specifically, individuals have become interested in personal genetic testing, or “medical tests that help identify changes in chromosomes, genes, or proteins that may provide clues to one's susceptibility to certain diseases, or whether they will pass on or inherit mutated genes.7,8 The genetic information that individuals could obtain through genetic testing could provide information regarding their predisposition to contracting diseases, including certain types of cancer and other diseases that are linked to genetics. Knowing of this predisposition to cancer as indicated through genetic testing, an individual is able to make lifestyle changes such as smoking cessation, better eating habits, an increase in exercise, or a decrease in alcohol consumption in order to decrease the risk of actually developing cancer.9 If an individual knows that he or she is genetically predisposed to developing cancer, he or she might be more diligent about cancer screening, therefore increasing the likelihood of early detection should the cancer develop. Finally, genetic testing can lead to improved treatment of cancer and other diseases as pharmaceuticals are being developed to work with an individual's specific genetic traits.9 In addition to aiding in the prevention, detection, and treatment of cancer, genetic testing can also be beneficial in helping couples avoid passing on hereditary diseases such as cystic fibrosis to their offspring.10

However, seeking genetic information is a daunting and complex process due to the changing information available, the methods that are utilized to seek such information and the numerous concerns regarding privacy that accompany the acquisition of genetic information. Perhaps the most common barrier to seeking genetic information is the constantly changing and evolving information that is available to the public.11 Another concern about genetic information is its complexity.11 Information about the human genome is quite complex and often wrought with technical and/or medical jargon that some people may find difficult to understand and comprehend. Also, a barrier to seeking genetic information is the lack of trained genetic counselors available to assist individuals in their genetic information seeking endeavors.11 Furthermore, a barrier to seeking genetic information is the concern about privacy and the likelihood of potential discrimination based on the information.9,12

Bernhardt and colleagues studied the use of the Internet as a method of obtaining genetic information.12,16 Through their research it was concluded that a few factors were associated with seeking genetic information via the Internet, including: having more experience seeking health information on the Internet, being comfortable receiving genetics information online, perceiving higher risk for genetic abnormality, being female, and having a higher education level.16 In their earlier research, Bernhardt and colleagues found that due to the perceived risks and barriers of receiving genetic information online (as discussed in the previous section) many genetic information consumers valued the Internet as a “supplemental source” for genetic information to add to the information gained through physicians and other sources.12 Johnson and colleagues introduced GENIS2 (Genetic Information-Seeking Skills) as an “intervention framework” to help build the skills necessary for people to seek genetic information.7(p. 335) GENIS2 is based upon the Comprehensive Model of Information Seeking (CMIS), which takes into account the roles demographics, experience, salience, and beliefs play in an individual's information seeking actions.7 Specifically, GENIS2 addresses a person's self-efficacy regarding information seeking and segments genetic consumers into one of four stages in order to develop information seeking interventions.7 The CMIS suggests that attitude and behavioral intention are key predictors of information seeking behaviors13,14; it is with this framework in mind that this manuscript examines attitude and behavioral intentions as outcome measures with reference to GHR.

Existing research on health information seeking suggests that consumer perceptions of quality are strong predictors of attitudinal and behavioral responses of e-health consumers.15,16,17,18 Although much has been written about the importance of the quality of e-health information, limited research has been conducted to evaluate consumer perceptions of quality.16–20 Given the complexity of genetic information and the abundance of information available online, the role of perceived quality of health information available online ought to be further explored.7,12,16 The study's contribution to the literature lies in its comprehensive assessment of quality attributes that predict consumer convergence. Also, a comprehensive examination of the quality attributes has practical value to web managers/editors in developing and making revisions to consumer oriented health websites.

Quality of Information

  1. Top of page
  2. Abstract
  3. Introduction
  4. Genetic Information Seeking
  5. Quality of Information
  6. Method
  7. Results
  8. Discussion
  9. References

The concern among health communicators and providers about the quality of medical information on the Internet is linked to the web's popularity as a primary source of health information. A poll conducted in August 2001 determined that almost 100 million Americans adults regularly go online to one or more of the over 100,000 sites offering health-related information.17 Even after hearing these statistics, some may still wonder why we should be so concerned with the quality of information found on Internet health sites. Hawkins answers this question by comparing the process of traditional publishing with the process of Web publishing.18 Those familiar with the process of publishing an article in a peer-reviewed academic journal are cognizant of the numerous steps and barriers between idea conceptualization and actual publishing. This lengthy process involves numerous reviews and revisions to ensure that the material that is ultimately published is of high quality. In contrast to this rigorous publication process is the relatively simplistic process of Web publishing. According to Hawkins, “there are no review hurdles to be overcome; as soon as the first version of the report is written, it can be posted on a Web site.”18(p. 86) It is because of this lack of review process and the ease with which information can be posted on the Internet that we must concern ourselves with the quality of information found on Internet health sites.

Assessing the Quality of Information

Diverse tools and measures are available to assess how consumers perceive the quality of information on a health website. According to experts, the quality of a health website fundamentally determines the extent to which the website is useful to healthcare consumers.19–21 The most commonly suggested criteria will be described in depth and the lesser-suggested criteria will be mentioned in the following sections. In developing the measures to be used in the study, the most frequently cited criteria will be utilized.

Accuracy

One of the most commonly mentioned criteria for determining the quality of information found on health-related websites is accuracy.19–25 In evaluating Internet health sites, accuracy is defined as “the degree of concordance of the information provided with the best evidence or with generally accepted medical practice.”20(p. 2695) It is almost common sense to say that it is important that health information made available on Internet sites should be accurate and correct. With the number of consumers turning to these health related Internet sites for information and advice, it is imperative that the information presented is accurate, or severely adverse consequences could result. Inaccuracy of information presented on a health website could result in a wide variety of detrimental health outcomes, especially because consumers are likely to act on the basis of such information. The discovery of inaccurate information on a health related Web site would immediately diminish the overall quality of that site. Unfortunately, because many consumers are not able to recognize inaccurate health information, we must rely on the creators of the sites to ensure that the information they are posting is accurate. Hain suggests that to ensure that the information they provide is accurate, creators of Web sites should involve experts in the topic area when determining what information to post.21 Given the absence of empirical studies that measure consumer evaluations of accuracy, this study contributes to the literature on accuracy by looking at the role of perceptions of accuracy in consumer evaluations of an e-health website.

Disclosures

Another very commonly suggested criterion for determining quality of information on health related websites is the presence of disclosures.4,20,26–30 While many articles offer a definition of “disclosures”28,29 Silberg, et al. most completely define the aspect of disclosure in regard to health websites stating that, “website ‘ownership’ should be prominently and fully disclosed, as should any sponsorship, advertising, underwriting, commercial funding arrangements or support, or potential conflicts of interest.”30(p. 1245) It is important that when a consumer visits a health care website, he/she is able to determine what information is editorial content, what is sponsored content, and what is advertising. Boulding suggests that in order for a health care website to offer quality information, it should “avoid a site design or layout that blurs the distinction between independent content and sponsored content or advertising.”26(p. 133)

Credibility

Credibility of the information offered on a website is often cited as one of the key criteria in determining the quality of a website.19–25 Credibility is often judged on the basis of the characteristics of the source of the information, and refers to the degree to which the information source is trustworthy and has the necessary expertise to offer information on the topic area. Credibility of e-health information is evaluated in the realm of authorship as well as the references used on a health website.

Authorship

Authorship was commonly suggested as a criterion that should be used to determine the quality of the information provided on health websites.4,23,27–30 Authorship is defined as providing the names, affiliations, and relevant credentials of all authors and contributors of information on a site.28–30 Providing this authorship information on the pages of the website increases the quality of the site and the quality of the information provided. Another option is for the site to make this authorship information available to consumers who request it—though having it readily available on the site is the preferred method of supplying authorship. Authorship adds to the quality of the information supplied on health care Web sites especially when the author providing the information have impressive credentials and are affiliated with well-known institutions and organizations.

References/Attribution

The referencing or attribution of information supplied on health care websites is very important and is commonly suggested as a criterion for determining the quality of information found on such Web sites.20,24,27–30 When considering the attribution of information on a site, a site should clearly list the references and sources for all content and all relevant copyright information should be noted.28–30 This concept is similar to the concept of authorship in that knowing the identity of the author and his/her affiliations enhances the quality of the information procured from the site. In addition, knowing the references, sources, and copyright information of any statistics, reports, and other pertinent information offered on the site enhances quality evaluations as well.

Completeness/Comprehensiveness/Coverage/Scope/Balance

While there are many terms used, the completeness or the coverage of a topic and the balance of that coverage are often suggested as a criteria for evaluating the quality of information on health care websites.19,20,22,23,25,27 Completeness of the information provided on a health care website is often difficult to define and also difficult to determine because unless it is blatantly obvious that some information is missing, it may be challenging to determine if all the information on the topic at hand is being presented. Risk and Petersen suggest that completeness may not be as important a criterion as previously thought considering the way in which consumers utilize the Internet.25 They assert that because consumers are likely to visit more than one website, one given website need not provide all of the information because the consumer will eventually get all the information by visiting multiple sites. Regardless, the more complete the information, the higher quality the information is considered. Balance of information, or the extent to which both positive and negative information are presented, is also an indicator of the quality of the information presented on health care websites.20

Currency

Another commonly suggested criterion for determining quality of information is currency.4,23,24 It is suggested that current information, or information on websites that have been recently update, is quality information. This may hold true for information on cutting edge health care issues where the most up-to-date information may be the highest-quality information. However, with some health care issues there may not be any new or up-to-date information to add. Therefore, while the criterion of currency may be important in some instances, it may not be an issue in other cases to determine the quality of the information.

Other Suggested Criteria

There are numerous other criteria that have been suggested to determine the quality of information on health care websites. Readability, or the reading level at which the information on the site is written, should be considered because if a consumer cannot read and understand the information on the site it is useless.20,25 Website design, including visual aspects of the site or the layout of the information is also a suggested criterion.20 Two additional criteria include relevance of the information to the audience and the clarity with which that information is presented.21

Although much has been written about expert-based indicators of e-health information quality, limited research exists on consumer perceptions of quality. Measuring consumer perceptions of quality is important because ultimately consumers make decisions about the usefulness of a website in their decision-making purposes. Through focus groups and in-depth interviews, Eysenbach and Köhler compiled a list of criteria consumers use to evaluate health care websites. These criteria include authority of source, layout and appearance of the site, advertising present on the site, readability, presence of outbound links, picture of the site owner, e-mail, credentials and qualifications, updating of content, and presence of a quality seal and third-party endorsements.4(p. 574) Gaining this information directly from the consumers who utilize health care sites is valuable because it confirms the findings and assertions made by academics and web site creators and at the same time offers new suggestions that should be considered in web development and fine-tuning. Based on a consumer-centric perspective, this study examines the role of demographics and perceived quality in predicting (a) attitudes toward GHR, b) intentions to use GHR, and c) a consumer's broader interest in genetic information seeking. The contribution of this project to health communication scholarship lies in the exploration of the collaborative contributions of demographics and quality criteria in predicting attitudinal and behavioral responses to an e-health resource.

Method

  1. Top of page
  2. Abstract
  3. Introduction
  4. Genetic Information Seeking
  5. Quality of Information
  6. Method
  7. Results
  8. Discussion
  9. References

Participants

Participants (N = 118; males n = 44%; females n = 56%) were individuals in the United States registered with the company Survey Sampling International (SSI). The United States membership includes over 2.5 million panelists (www.surveysampling.com). Members registered with SSI are enrolled using permission based banner ads and online recruitment methods (www.surveysampling.com). Their website describes panels as “localized” and “culturally appropriate” because panel communities are designed around an ‘intrinsic interest' appeal. In other words, panelists are chosen for particular surveys based on their interests. The ages of the participants ranged from under 24 to over 65 (11% were 24 and under, 23% were 25-34, 19% were 35-44, 23% were 45-54, 19% were 55-64, and 5% were over 65). The level of education ranged from did not complete high school to graduate/professional degree (1% did not complete high school, 19% completed high school, 37% had some college or vocational school, 25% were college graduates, 5% had some postgraduate school, and 14% had graduate/professional degrees). The majority of participants (48%) reported surfing the web from 2 to 4 hours per week. Others (32%) surfed over 6 hours per week, between 5 and 6 hours per week (15%), and from 0 to 1 hour per week (4%). The majority of participants lived in suburban areas (47%), followed by rural (32%), and urban areas (22%). The demographic characteristics of participants in this study is similar to the profile of online health information seekers.16

Procedures

Survey Sampling International contacted potential participants via e-mail and if they were interested in participating, they were directed to a link to the Genetics Home Reference (GHR) website and the survey. They were informed that the survey would take no more than 1 hour and that they would receive $15 for completion. They were directed to browse the GHR website until they had an understanding of the content and quality of the site. Then, they were directed to a separate survey page that asked general questions about their Internet use as well as some demographic items. Participants were also asked a series of questions about the site including a set of 29 semantic differential items, which are the focus of this investigation. These items were on seven point scales and were designed to assess the quality of the GHR website, drawn from existing measures of quality and tested in a pilot project with a student sample. Therefore, demographic items and evaluations of quality were the independent measures in this study. A principal axis factor analysis with Varimax rotation was performed and four factors emerged.

Evaluations of Quality

Credibility

The first factor, credibility (a = .94), included seven semantic differential items: authoritative-unreliable, trustworthy-not trustworthy, credible-not credible, believable-not believable, expert-inexpert, qualified-unqualified, accurate-inaccurate. These items' factor loadings ranged from .78 to .57 and the Eigenvalue exceeded 1.0.

Completeness

The completeness (a = .89) factor was comprised of five items: complete-incomplete, thorough-not thorough, sufficient-insufficient, extensive-not extensive, and informative-not informative. The factor loadings for these items ranged from .79 to .59 and the Eigenvalue exceeded 1.0.

Readability

The readability factor consisted of a single item: readable-not readable with a factor loading of .87 and an Eigenvalue in excess of 1.0.

Accessibility

Accessibility also consisted of a single item: accessible-inaccessible. The factor loading was .60 with an Eigenvalue that exceeded 1.0.

Dependent Measures

Attitude

Eight semantic differential items were used to measure attitude (a = .93): valuable-worthless, appealing-unappealing, good-bad, pleasant-unpleasant, friendly-un friendly, inspiring-uninspiring, like-dislike, useful-useless. The Eigenvalue exceeded 1.0.

Behavioral Intentions toward the Website

Behavioral intentions toward the website were measured using five Likert type items (a = .94) ranging on a 7-point scale from strongly disagree to strongly agree. The items were: “I will look for genetics information,”“I will to talk to my family and friends about genetics information,”“I will tell my family and friends about the website,”“I will return to Genetics Home Reference,” and “I will bookmark the Genetics Home Reference site.” Factor loadings ranged from .92 to .71 and the Eigenvalue exceeded 1.0.

General Behavioral Intentions

General behavioral intentions toward genetics were measured using three Likert-type items (a = .85) ranging on a 7-point scale with anchors: strongly disagree and strongly agree. Items included: “I will join a local group with an interest in genetics,”“I will seek more information about genetics from a library,” and “I will seek more information from a genetics professional.” Factor loadings ranged from .94 to .60 and the Eigenvalue exceeded 1.0.

Results

  1. Top of page
  2. Abstract
  3. Introduction
  4. Genetic Information Seeking
  5. Quality of Information
  6. Method
  7. Results
  8. Discussion
  9. References

The objective of this investigation was to assess the impact of quality perceptions on attitude and behavioral intentions toward a health website. To observe the effects of quality on the dependent variables, three hierarchical multiple regressions were conducted.

Attitude toward the Genetic Home Reference Website

Demographics and quality assessment cumulatively explained 79% of the variance in attitude toward the Genetic Home Reference website with demographics explaining 3% of the variance and quality indicators explaining 76% of the variance. Completeness (β = .362;p < .001), accessibility (β = .481;p < .001), and readability (β = .259;p < .001) all had significantly positive impact on attitude toward the website.

Behavioral Intentions toward the Website

Demographics and quality assessment cumulatively explained 44% of the variance in behavioral intentions toward the Genetic Home Reference website with demographics explaining 4% of the variance and quality indicators explaining 40% of the variance. Completeness (β = .291;p < .05) and readability (β = .226;p < .05) both had significant impact on behavioral intentions toward the website.

General Behavioral Intentions

Demographics and quality assessment cumulatively explained 13% of the variance in general behavioral intentions with demographics explaining 7% of the variance and quality indicators explaining 6% of the variance. Demographic and quality assessment variables had no significant impact on general behavioral intentions.

Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Genetic Information Seeking
  5. Quality of Information
  6. Method
  7. Results
  8. Discussion
  9. References

Whereas a large number of e-health projects have suggested the importance of quality indicators in web evaluation from expert-based perspectives, barring a few studies, there is a dearth of health communication scholarship that actually explores consumer perceptions of quality criteria.4,17–19 How consumers perceive the quality of e-health information, and the role of quality perceptions in the realm of attitudinal and behavioral responses is important in developing a theoretical understanding of how website attributes influence e-health behavior. A comprehensive treatment of the quality criteria offers empirical insights into the relative influence of the different quality criteria, something that hasn't really been done quantitatively in the existing health communication literature. Furthermore, developing an understanding of salient quality criteria offers guidelines regarding web design and development to make e-health websites more popular among healthcare consumers.

The results of this study have shown that the quality of health websites can have an effect on the attitudes and behavioral intentions of their users, above and beyond the influence of demographic variables. With regard to the GHR website, this investigation has shown that completeness, readability, and accessibility have a significant impact on users' attitudes toward the website. So, for the average consumer not only does a website have to be easily accessed and easy to read, but the information included on the site needs to be complete. Here, completeness offers a sense of comprehensiveness, such that the consumer feels that he/she is getting a balanced, multifaceted view of the issue. This makes intuitive sense especially in terms of health information, and more precisely, genetic information. Consumers want complete answers in a vernacular they can understand when they are looking at complex genetic information. Consumers also would like the website to be accessible to them. This confirms the findings of earlier research that suggests the importance of accessibility.16–19 One of the limitations of this study is its single-item measure of accessibility. Given that there are several aspects to accessibility such as physical access, lack of status differentials for interpersonal sources, effort expended, and so on, future research needs to delve further on developing an adequate measure of accessibility.

In terms of behavioral intentions, there were no significant relationships between quality indicators and general behavioral intentions, but for intentions toward the website, completeness and readability again emerged as significant predictors, beyond the variance explained by the demographic variables in the study. In order for a user to return to the website or tell family and friends about it, the information needs to be readable and complete. If a consumer finds the information on a site difficult to read or incomplete, s/he will not return to the website or recommend it to others. Once again, confirming the findings of earlier research, this study highlights the importance of completeness as a criterion that drives behavioral intention.17–18 Given the complexity of genetic information, it is also important that the website be readable in order to increase the likelihood that consumers will return to the website. In essence then, complex genetic information needs to be presented comprehensively at a level that is readable. This is a fine balance to work with as website developers and content managers have to navigate between comprehensiveness and readability. Future scholarship might further explore the elements of completeness and readability that can specifically drive the development of e-health websites.

Although this study provided some provocative insights into how the average consumer evaluates websites, there were some limitations. First, the use of Survey Sampling International (SSI) could be problematic because they are a company with registered users. So, our participants were likely individuals who participate in surveys often and have a different outlook on surveys and the Internet than the general population. Therefore our sample may not have been representative of the typical genetics website user. The panel-based nature of the study among Internet users is likely to bias the study toward internet users, particularly those that are likely to use the Internet for health and genetic information. Also, the use of only one website for evaluation could also pose some limitations. Using several websites allows for comparison between them and a more clear identification of the strengths and weaknesses of each. Future research could benefit from using several sites and tracking website usage in real time. Monitoring how a user browses a website could help web designers create pages that are more user friendly. Focusing on users evaluations of health websites is a logical first step in this direction. In summary, this project offers a stepping stone toward the examination of the role of consumer perceptions of e-health quality in shaping attitudinal and behavioral responses.

References

  1. Top of page
  2. Abstract
  3. Introduction
  4. Genetic Information Seeking
  5. Quality of Information
  6. Method
  7. Results
  8. Discussion
  9. References
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