Proposed Frameworks to Improve the Quality of Health Web Sites: Review

Cynthia Baur, PhD and Mary Jo Deering, PhD

Disclosures
In This Article

Results

(a) Disclosure: information that Web sites will provide users about their sites, including content, policies and practices, and business operations

The authors identified 38 separate elements across the 4 frameworks that could potentially be disclosed to users of health Web sites. All 4 frameworks agree on only 3 of the 38 disclosure elements: (1) financial investors and interests in the Web site; (2) dates relevant to assessing content on the site; and (3) identification of content sources. Five elements had agreement among 3 frameworks: (1) disclosure of information practices; (2) identification of owners and others with significant involvement in the Web site; (3) information about advertising practices; (4) sources of funding; and (5) the process for content review. The HON Code has the least number of disclosure elements; only 3 of the 8 principles of the HON Code are explicitly framed in terms of information to be disclosed to users.

(b) Web site actions: affirmative steps to which site operators commit to enhance quality and consumer protection

The authors identified 45 separate actions that Web sites would take to enhance a site's quality and its consumer protections (see Table 1). All 4 frameworks agree on only 2 elements in this category: Web sites must clearly separate advertising and editorial content and provide easy-to-use feedback mechanisms for users to communicate with a Webmaster site owner.

The separation of advertising and editorial content has 4 aspects: (1) advertising and editorial content should be clearly separated when displayed on a Web page; (2) topically related advertising and editorial content should not be juxtaposed; (3) sponsors' involvement in content must be disclosed; and (4) advertising and editorial decisions are made independently. The AMA Guidelines pledge to all 4. The eHealth Ethics Code explicitly agrees with separation of advertising and editorial content and editorial independence. Sponsorship is alluded to as an example of a relationship of influence that requires disclosure. The eHealth Ethics Code appears to have strong protection against improper commercial influence with its promise that content editors of sites with information "primarily for educational or scientific purposes" have the right of refusal of inappropriate advertising, but it is not clear to which Web sites this directive would apply. All commercial health information Web sites claim to be primarily providing information for "consumer education." The Hi-Ethics Principles and the HON Code do not discuss editorial independence, but do commit to separation of advertising and editorial content and disclosure of sponsors' involvement. Hi-Ethics is the most explicit in defining financial influence: 10% or more of an ownership stake or contribution to annual revenues for the company.

Two elements were similar among 3 of the 4 frameworks: the need to be explicit about support for claims of therapeutic benefit, and the importance of using clear language that is appropriate for intended audiences.

(c) Choices provided to users by Web sites

We identified 14 situations in which Web sites will offer specific choices to users on a site. The choices pertain to protecting personal information, ecommerce, and receiving advertising messages. The majority of the situations (11 of 14) pertain to users' choices about the collection and use of personal information on a Web site.

Three of the 4 frameworks agree that Web users should be given a choice about the collection and use of their personal information on a health Web site. The HON Code does not frame privacy and confidentiality protections as a matter of disclosure or consumer choice, but rather as obligations that a Web site incurs when it interacts with the public. The language that 3 frameworks use to describe choice is different enough that it is not clear whether they define choice and the situations in which choice can be exercised in the same way. The Hi-Ethics Principles have elements of the Fair Information Practices Principles of notice, choice, access and security to protect personal information. The Principles appear to make a distinction between users' "meaningful choice" for the use of personal information and explicit consent for health-related personal information, but without further clarification, it is difficult to know whether there is an important difference between meaningful choice and explicit consent that will provide users with greater protections for health-related personal information than for other kinds of personal information. The eHealth Ethics Code sets a standard of "specific affirmative consent" from users for sites to collect, use, or share personal data and states that "People have the right to expect that personal data they provide will be kept confidential." The AMA Guidelines affirm that "all site visitors should have the opportunity to opt in or out of allowing personal information to be tracked" and that information that can identify a patient should never be used in a medical publication without "express informed consent."

(d) Acknowledgement of accepted professional practices and legal obligations

Ten elements identify relevant professional practices and legal obligations that apply to health Web sites. Nine of the 10 elements offer guidance about the conduct of health professionals who provide advice or services on a Web site. The tenth element refers to the need for Web sites to observe existing federal and state laws regarding promotions, rebates, and free or discounted items and services. The Hi-Ethics Principles and eHealth Ethics Code agree that health professionals' offline codes of conduct apply to health sites, but the emphasis on responsibility differs. The Hi-Ethics Principles emphasize developers' responsibility to design sites in such a way as "to enable health care professionals to adhere to professional and ethical principles in the online environment." The eHealth Ethics Code focuses directly on healthcare professionals as independent moral agents who should "abide by the ethical codes that govern their professions as practitioners in face-to-face relationships." Notably, the AMA Guidelines provide the least explicit direction for healthcare professionals. The Guidelines do say that healthcare professionals and moderators of online discussion groups, chat rooms, or e-lists should follow confidentiality principles and make sure that participants understand that sensitive information is not likely confidential.

(e) Unclear terms with unclear commitments

Among the 4 frameworks, the authors found almost 2 dozen separate terms that were unclear in the protection they will provide Web site users. These terms imply a standard without explaining its basis. Examples include "easy-to-use," "reasonable expectations," "significant revisions," and "meaningful choice." An additional category of unclear language is the verbs that are used to indicate how Web sites will communicate important information to users. The frameworks use, among other terms, disclose, indicate, tell, and provide for situations in which users will have information about the site's operations. The frameworks do not say, however, whether these words are used interchangeably or imply a different standard of information available to users.

(f) Comparison of frameworks with Healthy People 2010 objective

A comparison of the 4 frameworks with the Healthy People 2010 objective shows that they agree on 4 elements: (1) sources, (2) dates of content, (3) identification of financial interests, and (4) mechanism to contact the owners or developers of a site. Only the eHealth Ethics Code asks for the purpose of the site. Evaluation, which can entail pretesting of a Web site and its content or assessment of a site's impact on health status and outcomes, is addressed in 3 frameworks only in terms of evaluation of content. The Hi-Ethics Principles commit that a site will disclose the procedures used to evaluate the quality of health information content. The eHealth Ethics Code says sites will disclose how they evaluate content and the criteria used. AMA sites will also disclose information about the editorial process and methods of content review. If sites continue to add more risk reduction and disease management tools to attract users, then the lack of impact evaluation will become a more critical gap.

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