Envisioning 2.0

Last week, a new medical wiki, Medpedia, received significant attention when it announced that several major medical institutions, including Harvard Medical School, were partnering with the startup.  Mark Senak who writes at Eye on FDA, suggested that “when given a choice of learning about the drug from (1) the manufacturer or (2) an objective third party source representing the finest medical schools in the country, patients and physicians are likely to gravitate to the objective resource.”  He also believes that “the influence of Medpedia on prescribers . . . and patients stands to be quite large.”

While Medpedia allows anyone to contribute information, it only gives physicians or PhDs the ability to serve as editors.  These highly credentialed individuals will have the final say on what content ultimately makes it into the online publication.

This restriction has incensed some advocates of full and equal patient participation in medical information sharing, development and dissemination.  In an impassioned post published recently on e-patients.net, Dave deBronkart took Medpedia to task for restricting access to the site.  He wrote: “[W]hat patients need from an online resource is reliable information on topics where they’re not experts . . . And my experience is that it’s an error to presume that doctors inherently have the best answer[s].”

To his credit Medpedia founder James Currier responded to deBronkart’s essay, saying: “I want to make it clear [patients] ARE being invited in.  There are already several key features that anyone — whether medical professional, expert patient, or layperson – can use to engage.  Anyone can create a profile.  Anyone can create or join a Community of Interest to connect and debate (they are admittedly rudimentary today but will be improving in the coming months), and anyone can use the Suggest Changes feature on every Article page. Use these features vigorously.”

The ongoing debate over Medpedia and its editorial policies illustrates – yet again – that some Internet empowered patients and caregivers are chaffing and outright rebelling at the traditional hierarchy of the medical establishment.  Although they respect physicians, they do not automatically view them as the most authoritative source of health information.

In fact, according to a study my firm Envision Solutions published last year, thirty-eight percent of U.S. adults say they have doubted a medical professional’s opinion or diagnosis because it conflicted with information they found online.

Because a good number of physicians believe that a lot of online medical information is of low quality, they worry that patients are second-guessing their advice (or orders) based on shoddy information.  Is Medpedia an attempt by the medical profession to ensure that (via the magic of search engines) content a broad range of content physicians have vetted finds its way into the hands of patients and others?  Would it be a stretch to posit that some people behind Medpedia wish to dampen the disruptive impact of the Internet by ensuring that content people are seeing is consistent with broad medical practice or opinion?  After all if the information patients are reading is consistent with standard medical advice there is less room for disagreement.

The Medpedia debate is another skirmish in the war medical professionals and active laypersons are fighting over the future of medicine.  E-patients like deBronkart trust physicians, but know they are prone to errors of fact and omission.  Medpedia respects the contributions of patients, but  maintains that “physicians and Ph.D.s in the biomedical fields have gone through extensive training and screening before receiving their degrees, and those degrees can serve as an efficient proxy for the Medpedia community to judge an Editor’s ability to contribute accurate and up to date information to the encyclopedia.”

In the end it comes down to what credentials one believes makes people best qualified to develop medical content: a degree + clinical experience or extensive research + personal experience.  It’s clear where the creators of Medpedia come down on this question.  Where do you stand?

A significant part of the recently signed stimulus package (at least for people in the health industry) is comparative effectiveness research.  Now that the bill has become law, government agencies will be required to conduct large-scale head-to-head clinical trials to determine which prescription medications are truly superior.

Some pharmaceutical industry stakeholders and physicians do not like comparative trials, and their experience with the ALLHAT trial illustrates some of the reasons why.  The ALLHAT trial demonstrated that generic blood pressure medications are better than more expensive alternatives.  The results sounded good until prominent physician thought leaders began to take the data apart and suggested that the government skewed the study results.

More troubling is that some doctors said the government based the study on poor outcomes experienced by African American patients taking certain types of blood pressure pills.  Differences in how people from various ethnic and racial backgrounds respond to medications is one reason minority advocacy organizations are resisting the push to launch more comparative effectiveness studies.

The Congressional Black Caucus expressed concern that “comparative effectiveness research will be based on broad population averages that ignore the differences between patients.”  While House and Senate negotiators inserted language in the final bill requiring government-funded trial to include adequate numbers of minorities (and women), some are still concerned that this isn’t enough.

The issue of differences in how people of various racial and ethnic groups respond to medications was a major topic of the interview series I conducted a few years ago focusing on race and medicine.  You can read one scientist’s comments about this issue here.

This week, the New York Times and other outlets reported that Bayer has taken the rare step of producing and distributing corrective advertising for its Yaz brand name birth control medication.  Yaz is indicated for the prevention of pregnancy, management of moderate acne and premenstrual dysphoric disorder.  Bayer produced an advertisement that the FDA requested be removed because viewers could interpret it to mean that Yaz helps women remedy a larger array of acne symptoms and can help treat PMS.

The Times reported that the FDA and a group of states attorney generals forced Bayer to spend $20 million to air a series of commercials correcting the record and stating that the company’s previous advertisements were “unclear.”

John Mack who writes the Pharma Marketing Blog wondered if Bayer “shouldn’t use its power” to ask an actress (Desiree Hall) who appeared in the TV commercials to remove the advertisement from YouTube.  It is worth mentioning that Hall has also published a number of her other commercials on YouTube, indicating that she is using the Website for self-promotion.

Based on my understanding of FDA regulations, unless Hall was acting as an agent of Bayer when she posted the commercials, the drug firm has no responsibility or obligation to ask her to remove the spot.  Although Bayer employed Hall, the company does not have direct or indirect control over the content Hall chooses to upload to YouTube.  Of course the situation would be a little bit different if Bayer (or one of its agencies) had uploaded the video to to the video sharing Website.

In the end, it all comes back to control.  If a drug firm is responsible for the social media content, then the relevant marketing regulations apply.

With increasing numbers of manufacturers and retailers recalling peanut-containing products such as peanut butter daily, it is very difficult for consumers to figure out what foods to avoid and how the government is responding.  Now, the CDC and its sister agency the FDA, have turned to social media to help quickly disseminate information about the various recalls.

For example, tomorrow, the CDC will be holding a Webinar specifically for bloggers designed to “give blog writers the chance to speak with FDA and CDC subject matter experts about the Salmonella Typhimurium outbreak efforts and future resources for bloggers during food safety incidents.”  This is an important step, as bloggers often spread the word about health news items and have a broader reach (via social network and search engine effects) than traditional media publications.

The blogger Webinar is very interesting and I encourage those interested in learning more about the peanut recall and the government’s evolving crisis communications strategies to attend.  It will take place tomorrow February 3 from 2:30 – 3:30 p.m.