Principal Findings
Restricting access to information as implemented by these websites has several implications. In the first instance, patients may not have access to desired information. Anything that limits a patient’s knowledge has the potential to adversely impact autonomy [8,9]. It can be argued that patient-oriented pharma websites contain complete information and already present all of the information that a patient needs in a useable form. Whereas it might be intuited that this solves the problem of information access, patient-oriented pharma websites may present a skewed view of drug risks and benefits and often contain advertising designed to entice the patient [10-12]. One might also argue that the lack of access to “professionals-only” information can be mitigated by the US FDA (the agency responsible for the approval and safety of drug in the United States) having made it a requirement that pharma advertising allow patient access to the package insert, including Web-based advertising [13]. However, the language of packaging information (and medical information on the Web in general) is written at a level that is often incomprehensible to the general public [14-20]. Thus, providing unfettered access to the “professionals-only” information will not in itself solve the problem of lack of accessibility; enhanced readability and a better presentation of information would generally be needed for the information consuming public. This is not an unsurmountable barrier; difficult information can be presented in a manner that is accessible to the general public [19]. We can enhance individuals’ ability to make autonomous choices by improving the quality of information presentation.
One can argue that consumers can get the same information elsewhere on the Internet (eg, wikis, sites such as drugs.com). This creates a fundamental dilemma, however. For patients to know what information is missing from their current knowledge base, they first need to access the “professionals-only” information. Thus, the argument that the same information is available elsewhere fails. This may be the case but the uncertainty in patients’ minds will continue.
A second, and perhaps more troubling, dilemma arises when there is “professional-only” information on pharma websites that requires an attestation as to one’s status as a health care provider. The patient can then either (1) not access the information or (2) lie about their status as a professional. Either outcome is unacceptable. Introducing lying into the therapeutic space can have adverse consequents. Requiring patients to lie in order to obtain information sets a bad precedent. If lying is tacitly accepted as part of the medical system, it has the potential to undermine one of the pillars on which medicine is built; truth telling. Worse still, the system that a patient would like to have faith in is enticing them to lie. Forcing patients to lie may challenge one’s faith in the truthfulness of other aspects of care and the medical system [21,22].
Finally, “professionals-only” information can suggest that health care professionals have some dark, mysterious secrets to be hidden from the public. Patients might legitimately wonder what it is that we health care professionals have to hide. Such concerns might further undermine trust in the medical system. Such distrust, whether generated by the perception that there is information hidden from the patient or because of the requirement to lie in the medical sphere, translates into worse patient outcomes [23,24].
It is true that patients can become overwhelmed with information. One solution is to have providers act as interpreters of information; this is the model preferred by many patients [21]. This puts the onus on providers; unfortunately, providers often do not do a particularly good job of laying out the benefits and harms of therapy either [25]. However, a provider-patient partnership with the provider interpreting information for the patient and directing the patient to reliable Web-based information can be a viable model [26].
Limitations
We did not look at the content of “professionals-only” websites and compare this with the content of the patient-oriented websites. For the purposes of our study, such a comparison is a secondary consideration and would not change the study outcome; our main purpose here is to highlight the ethical issues surrounding “professionals-only” websites needing an attestation. A follow-up study could be designed to examine the issue of content. However, no matter the outcome of such an analysis, the basic dilemma remains; patients have to lie to get to “professionals-only” content or do without this information. If the content of the patient and the professional is the same, why require an attestation which may prompt the patient to lie? If the content of the professionals-only and patient-only websites are different, why are we not providing patients with the same information that we are providing to professionals (albeit presented in a manner appropriate for lay-people)?
A second weakness of our study is that we only looked at a small sample of pharma websites. It is possible, but unlikely, that many other pharma websites do not have embargoed information. Nonetheless, we have shown that there is a potential problem related to embargoed information, lying, and trust.