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

Cynthia Baur, PhD and Mary Jo Deering, PhD

Disclosures
In This Article

Conclusions

The challenge to find the right balance between sufficient transparency and understandability without overwhelming consumers confronts all the frameworks discussed in this article. It is clear that the intent of the frameworks is to contribute to the improved quality of online health information. We will not be able to assess actual quality improvements, however, until several serious issues are resolved and the frameworks are implemented and monitored. The most pressing issue is for frameworks' sponsors to affirm consensus on fundamental elements and standards that become the core of all the frameworks. This core will then have to be effectively implemented and clearly communicated to consumers. The results identify common elements and important gaps for quality standards in the multiple frameworks. The results also indicate that when a framework either has a unique element or lacks an element common to the others, the discrepancy cannot always be explained by reference to the intended audience or purpose of that framework. The inclusion of any criterion in a core set, whether or not it has already been identified as a consensus element, should be determined by its value to users. Consensus does not necessarily mean the merging of all frameworks into one, but it does mean forging agreement on what Web site developers and users need to do and how the information will be described and made actionable.

A related issue is the understandability of the language used for the core criteria. Currently, the closer the elements are examined, the greater the confusion. The use of technical or obfuscating language, or the provision of extremely lengthy disclosure text, reduces the value of the disclosure significantly. "Plain language" is a requirement for the disclosure approach to be of value to consumers. Disclosure would also be more meaningful with consistent use of terms, which would require private-sector groups to cooperate to define terms in the frameworks. A standard glossary of terms that applies to all of the frameworks would be an important contribution to the field.

Another serious issue to be resolved concerns the need to assure commitments to privacy protections. Currently, the frameworks have gaps in the protections offered to users. Privacy and confidentiality policies are important, not only to protect the information that sites can collect about users, but also to protect the full range of personal information that users may make available while they interact on a site. The National Committee on Vital and Health Statistics, the advisory body to the Secretary of HHS and Congress on health information policy, is clear in its paper on the National Health Information Infrastructure that we need robust privacy and confidentiality protections in light of the vast array of personal health information that will be exchanged over the Internet.[9] An important next step would be agreement among the framework developers on precise categories of information collection, uses, and sharing; on the mechanisms for choice for each category; and on clear, simple descriptions of these categories and choice mechanisms. The categories and mechanisms should seek to optimize protection, functionality, and user understanding. Although a balance among all these values may be difficult, it is worth pursuing because of the consumer trust that will follow clear, substantial assurances.

A final serious matter is how to implement any code. Even with as much detail as the frameworks currently have, as ethical codes, they are too general to constitute rules of operation for individual Web sites. Any consensus code will require varying degrees of elaboration, commentary, and supporting documentation for Web site developers. Moreover, the general public needs to know how to interpret the codes and any seals linked to them. Educational activities for the public, intermediaries, and consumer advocates will be vital to create informed users.

The analysis shows that the proposals and the Healthy People 2010 objective on Web site quality do not fully coincide. However, it is possible that as the field matures, the Healthy People objective may need to be revised at mid-course review. The objective and the private-sector frameworks need to be relevant not only for the here and now but also to the imminent future of emerging applications and business models in the ehealth space. HHS can contribute to the field by promoting measurement of the number of sites that disclose quality information, which will help the private sector assess its own efforts. The Department can also help by working to improve the quality of its own public Web sites that can serve as models. The Department could develop standards for HHS sites and support evaluation of the impact of Web-based health activities.

Good-faith efforts will not be sufficient to protect users. The presence of seals of approval and certifications can mislead consumers and provide a false sense of security without rigorous verification. Even though verification of disclosed information may be difficult in some circumstances, it is critical that the private sector develops clear and verifiable criteria, realistic mechanisms to enforce adherence to standards, and specific sanctions for violators. Consumers will benefit when Web sites dedicate themselves to providing clear, understandable information about a site's operations that does not overwhelm users. Then, consumers will be able to assure themselves that they have found a reliable, safe place on the Web to help them with their health concerns.

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