Can social media improve patient outcomes?
This morning Diabetic Investor read an interesting article published on the drugwatch web site entitled; “Diabetes and Social Media: Helping Patients or Drug Companies?” (http://www.drugwatch.com/2012/12/10/diabetes-and-social-media-helping-patients-or-drug-companies/) The article does a nice job of covering both the benefits and possible drawbacks of how people with diabetes use social media. As everyone should know by now Diabetic Investor, who just recently jumped on the social media bandwagon with our very own Facebook page, is somewhat conflicted on the role social media plays in the diabetes world. Given the wide acceptance and continued growth in the use of social media the question needs to be asked- Does social media make a difference or put another way can the use of social media improve patient outcomes?
According to the article; “Others argue that there isn’t enough information out there on whether social media is really helpful to those with diabetes. Jason Bonner, a doctor at the University of California San Diego Medical Center, is leading a study to determine if patients can use social media to manage the disease. “There is no proof in diabetes that social networking is helpful,” Bonner told NPR News.” While there may be some who would question the value of such a study, Diabetic Investor is actually very interested in what Dr. Bonner learns. No matter what the outcome an even bigger set of questions loom on the horizon and point to an intriguing set of issues.
First and foremost, as the article correctly notes, is the issue of whether the FDA should be regulating social media sites. All anyone needs to do is Google diabetes and they will find thousands of blogs, Facebook pages, YouTube videos and Twitter posts made by patients with diabetes. Additionally nearly every company in the business of diabetes has embraced social media in one form or fashion. As noted earlier given the growing popularity and influence of social media it would be foolish for these companies to ignore social media. Therefore the question remains; should social media be regulated by the FDA?
On the one hand it would be easy to answer in the affirmative given that many patient blogs talk about diabetes drugs and/or devices, products which are regulated by the FDA. Whether the posts are positive or negative, patient blogs are not subject to regulatory scrutiny and anyone reading these posts has no idea whether or not the statements made are true. Take for example the web site for Victoza®, the once-daily GLP-1 from Novo Nordisk (NYSE:NVO), a drug which carries a black box warning from the FDA. The home page of the site www.victoza.com carries the following statement; “In animal studies, Victoza® caused thyroid tumors—including thyroid cancer—in some rats and mice. It is not known whether Victoza® causes thyroid tumors or a type of thyroid cancer called medullary thyroid cancer (MTC) in people, which may be fatal if not detected and treated early. Do not use Victoza® if you or any of your family members have a history of MTC or if you have Multiple Endocrine Neoplasia syndrome type 2 (MEN 2). While taking Victoza®, tell your doctor if you get a lump or swelling in your neck, hoarseness, trouble swallowing, or shortness of breath. These may be symptoms of thyroid cancer.” The site also includes the label for Victoza as well as link to the FDA’s medwatch site.
Yet looking through a wide array of blogs posts on Victoza, Diabetic Investor did not see one which included any of the drug’s safety information. Now granted one could argue that patients should not switch therapies without first consulting with their physician and it is the responsibility of the physician and/or pharmacist to inform the patient of the drug’s possible side effects, but this view is overly naïve and fails to take into account the influence social media has on a patient. The fact is many patients actually believe that blog posts are actually more credible than sites put up by the company, even though these blogs are not vetted in any way.
On the flip side of this issue over whether regulation is needed and if so how would this work in a practical sense, is the valuable role social media can play in the diabetes world. While companies like to enjoy the positive aspects of social media, they are also keenly aware that social media comes with a dark side too. A perfect example of this are the many posts Diabetic Investor has read regarding the battle between Dexcom (NASDAQ:DXCM) and Medtronic (NYSE:MDT) for supremacy in the continuous glucose monitoring market. On balance we noted a clear preference and generally positive comments made by Dexcom users, while comments made by Medtronic patients were more on the negative side. Here Diabetic Investor sees a very positive role for social media as it is doing what social media does best, giving patients unfiltered comments so they can make a more informed decision.
To Diabetic Investor this is a role social media plays very well in the diabetes world as there several excellent blogs that allow patients to share their experiences. As we have noted on numerous occasion diabetes is not just a chronic disease, it’s also a lifestyle; a lifestyle that’s not easily understood by someone who does not have diabetes. This ability to share experiences is invaluable to patients not just when considering which drug or device to use, but also how to deal with the many day to day issues people with diabetes face. Frankly it’s not possible for someone who does not have diabetes to understand what it feels like to inject insulin in a public place or what a hypoglycemic event can do to a patient. The simple facts are people with diabetes feel more comfortable and have a higher level of confidence when talking to other patients who also have diabetes.
Social media plays another extremely valuable role often times it is the first place patients learn about problems or issues with a particular drug or device. This is a point that is often lost on the many companies that are trying to harness the power of social media; they love positive comments but far too often ignore negative ones. Rather than reaching out to these patients and seeking more information, companies too often go the exact opposite direction when in truth they would be much better off if they actually listened to what real patients have to say. We’ve said it before and we’ll say it again, diabetes is not something that can be learned from looking at a spreadsheet or viewing a PowerPoint presentation.
Even with the many positive positives social media brings to the diabetes world; it would be foolish not to acknowledge that some oversight is needed. The fact is unfiltered content is both a blessing and curse as with no vetting in place there is nothing Diabetic Investor is aware of that would prevent a company from paying someone to post overly positive comments about their particular product or overly negative comments about a competitor on the more widely read diabetes social media outlets. This is really no different than how investors used internet message boards to bash or pump a stock. The folks that manage diabetes social media must acknowledge this very real possibility.
The main issue as Diabetic Investor sees it is not whether some form of oversight is needed rather how this oversight would work in the real world. Here is the problem in a nutshell social media moves at lightning speed while oversight, especially the FDA, moves at glacial speed. When a patient with diabetes post a comment or has a question they don’t want to wait days, weeks or months for an answer to be vetted, they want the answer yesterday. But that’s only the beginning of the problem.
Consider what happens when something goes viral which is completely false or misleading. Given the diabetes epidemic it should surprise no one that the internet is filled professional con artists playing on the fears of patients with diabetes and their families. This is not unlike the many so-called charities that spring up after a natural disaster which are nothing more than scams to separate people from their money.
The bottom line is some balance and reality needs to be brought into the system. First and this should be obvious, everyone including the FDA must acknowledge that social media is here to stay and can play a very important and positive role in diabetes. Second, diabetes social media should not wait for the FDA and take the lead on this issue coming up with a reasonable set of standards designed to protect unsuspecting patients from professional scam artists. Even better social media should reach out to and begin a dialogue with the FDA. For as much complaining as everyone does about the FDA there has been a noticeable change at the agency as they see what’s going on with social media, they’re just not sure what or how they should move forward. The faster diabetes social media gets ahead on this the more likely it will be the relationship with the FDA will not be adversarial and more helpful in nature.
Third, transparency is critical but no need to go overboard. Diabetic Investor believes if a blogger is receiving compensation whether it is actual payments or free products this information should be disclosed. Yet we disagree with some who believe that mere disclosure is not enough and that bloggers should not accept compensation or have any ties to industry, this is not just unrealistic it’s also plain stupid. The fact is running a web site, blog or social community costs money and Diabetic Investor sees no reason these people cannot make a living. Nor do we believe that it is the bloggers responsibility to insure that people who visit the site actually read the disclosure statement. The fact is most people don’t read these statements just as they don’t read the labels that come with the drugs they take or the devices they use, this is just human nature and while some believe you can regulate human nature this is also very stupid. Companies should also be required to disclose any relationships they have with web sites, blogs and social communities.
The reality here is that social media is really no different than mobile apps or other yet to be discovered tools which offer instant information. It’s also true that without some reasonable oversight instant information sources could become as reckless as the Wild West used to be without law and order. The last thing diabetes needs is a bunch of snake oil salesmen giving false hope or worse taking attention away from the many very real efforts to help patients. The fact is we are at the crossroads when it comes to oversight and technology, something thankfully the FDA does acknowledge. Diabetes social media should not run from oversight, rather the exact opposite approach should be taken as diabetes social media should take the lead here and drive for reasonable oversight. Oversights that ultimately will enhance not detract from the good work they are already doing.
Listen no one in their right mind wants to be regulated and given the way the government has gone overboard with regulations this is perfectly understandable. However, it is also true that the freedom we enjoy today comes with responsibility. As Theodore Roosevelt wrote; “Freedom is not a gift which can be enjoyed save by those who show themselves worthy of it.”
