Zagat Comes to the Pharmacy? User Reviews of Prescription Drugs - Episode 16
Meredith Abreu Ressi, VP of research

 The rise of user-generated content in the form of health-specific ratings and reviews is poised to be one of the most popular – and potentially transformational – innovations to come out of the Health 2.0 phenomenon. Sites such as HealthGrades, RateMDs, and UCompareHealthcare all offer consumers the opportunity to compare user experiences – and hard data from third party sources – to use in selecting doctors, insurance plans, hospitals, and other healthcare service providers.

One of the most popular genres for these user-contributed reviews in healthcare today is actually user reviews for pharmaceutical products. In an era in which consumers are increasingly footing the bill for expensive treatments, while also seeing allegations of selective clinical trial data reporting by companies, it’s no wonder consumers are turning to the Web to do their own research on efficacy, side effects, and outcomes.

The website DailyStrength, for instance, has over 1,800 reviews for the prescription drug Topamax, a product approved for treating migraines. Under the heading “Treatment Success Rates” on the site, 69% of users taking Topamax report it was “helpful.” It is interesting to note, however, that the majority of the reviews for the product on DailyStrength are not from migraine patients, but from patients who are taking the product to treat bipolar disorder, an off-label use of the product. Since Topamax is not approved for bipolar disorder, it is likely to be difficult for patients with bipolar disorder to gather data surrounding this use of the drug – which makes these reviews especially useful to prospective patients.

Another example of the utility of such sites was found in a recent article in the New York Times, which profiled the experience of a multiple sclerosis patient, who frequently experienced what is known as “foot drop” as a result of the condition. The patient, Todd Small, had been taking ten milligrams of baclofen, a muscle relaxant, for the past fourteen years, and was told by his neurologist that this was the maximum recommended dose for the drug.

The article goes on to profile Todd’s experience when he joined the website PatientsLikeMe.com – a site devoted to pairing up patients with certain conditions for support, as well as acting as a clearinghouse for patients to share data about their treatments and success rates. In reviewing the profiles of other patients with MS on the site, Todd realized that other people were taking as much as 80 mgs of the drug each day – and requested his neurologist increase his dosage as a result. Todd’s experience highlights what is sure to be one of the most dramatic effects of Web 2.0 in healthcare – namely, the rise of what amounts to consumer-reported outcomes data through sites like PatientsLikeMe, or through the “drug ratings” data that have proliferated on sites such as WebMD, Daily Strength, and CrazyMeds.

But with all of the rich treatment data and profiles of the patient experience that can be found on these sites, it’s important for the companies that make these treatments to consider the role they will take in monitoring, soliciting, or responding to reviews or data on these sites. As these resources gain popularity, this is a question that pharmaceutical, biotech, and device companies will have to wrestle with, with a goal of ultimately developing policies surrounding best practices for handling – or not handling – content on these sites.  

One corporate policy companies may want to consider is how employees are permitted to be involved in monitoring the reviews on these sites. Many companies shy away from coming in contact with user-generated content – in all its forms – because of fears surrounding adverse event reporting and discussions of off-label use of the product. Taking such a conservative approach can only serve to distance the companies from the patients who rely on them for innovation, research, and support. As such, some companies have figured out productive ways to leverage the vast stores of information being gathered on these sites without wading into potentially treacherous regulatory waters.  Sites such as PatientsLikeMe, for instance, actually sell data aggregated through the site to pharmaceutical companies for analysis – a practice that is, for the record, disclosed in the site’s privacy statement. At a higher level, these sites also provide a valuable focus group opportunity to understand the treatment experience and challenges that patients face.    

Most companies today haven’t gone much farther than featuring advertisements on these sites– and some companies even consider that to be too risky. If companies continue to take such a defensive crouch when it comes to user-generated content online, they are sure to continue to distance themselves from their customers – in a time when dialogue between pharmaceutical companies and their patients is more necessary than ever.



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