Tag Archives: clinical trials

Experimenting with The Emotional Impact of Facebook: New Issues Surrounding Social (Cyber) Studies Without Specific Consent

Facebook, twitter and other social media platforms have become a hotbed of data for marketers, business and product development experts.  In addition, social media has created a new way to observe and investigate some of the intricacies of human behavior and social interaction.  Last week, a study conducted using Facebook users as subjects was published in the Proceedings of the National Academy of Sciences and reported this weekend by the Wall Street Journal as well as the New York Times.  This study, while interesting, has raised a new debate on the ethics of using social media users in social experiments without their consent.  While Facebook claims that they have all rights to perform such experiments under their terms of engagement–that all users sign when they create a Facebook account, many Facebook loyalists are upset and feel as though they have been manipulated and violated.

As an academically trained Cardiologist at Duke University and now faculty at the University of North Carolina, I have had a great deal of experience in medical research throughout my career.  There are basic principles and rules that must be applied when designing and conducting any investigation involving human subjects.  All scientific research on human beings requires informed consent.  In the University setting, we have Institutional Review Boards that provide oversight to any human experimentation–these boards function to protect the rights, safety and privacy of patient subjects.  When researchers manipulate variables and look to examine results, patients can be affected–either positively or negatively.  There has been a great deal of outrage over the recently published Facebook experiment.  Many debate whether or not Facebook has crossed ethical lines by performing a study involving manipulating variables without the consent of the user.  While the attorneys at Facebook will argue that its users give blanket consent to research under their terms of service– I believe that the rules that all of us must follow in any type of human experiment should apply.  Social media and networking is now a part of everyday life and spans all age groups–all of us are affected in some way.

This recent report is no surprise–We have known that Facebook and other social media outlets have gathered data on users for years.  Google and Yahoo have certainly utilized data obtained from individuals search preferences in order to promote advertising of certain goods and services on their homepages.  In fact, Facebook has an entire data science team that is given the job of collecting and analyzing data from nearly 800 million users worldwide.

In the latest investigation, researchers set out to determine if the content of posts on a user’s newsfeed could influence mood.  For one week in January 2012, the accounts of over 600K randomly selected users were manipulated by the research team.  According to Facebook executives,  the identities of the individuals in the study group were blinded and no personal information was shared. What they found was impressive–users whose news feeds were flooded with more negative postings tended to produce more negative content themselves and those users whose newsfeeds were  flooded with positive and inspiring news predominantly produced more positive content themselves.  Previous research in the area of emotional contagion seemed to indicate that in order to pass on a mood or emotion, in person contact and non verbal cues are required.  After conducting the Facebook experiment, the authors concluded that now emotion and mood can be passed on in an online environment without any in person contact at all.  Moreover, emotions shared on social networks can provide a system for large scale spread to millions simply as a result of negative or positive posts by others.   While this information is interesting and potentially quite useful to the both the business and scientific communities, this utilization of human subjects as “emotional guinea pigs” without informed consent has created outrage among many throughout the internet.  Manipulating the emotions of Facebook users within the framework of this experiment has been seen as an abuse of trust by many who are engaged in social networking and calls into questions the ethics of social experimentation via online platforms.

Beyond the ethical considerations that this type of investigation raises, I believe that this study actually may provide a very important message to those of us who utilize social media in medicine.  Social media is a powerful tool that allows us to communicate ideas, describe new technology and treatments and disseminate information.  This communication can be quite broad and the audience can be rather diverse–patients, colleagues and industry leaders.  As physicians, our voices can be heard well beyond our respective institutions and social media allows us to reach broadly.  Because of this reach, and the power of social and involves We must remain positive and hopeful.  Our words can greatly influence the outlook of those who read our blogs, follow us on twitter and check our Facebook postings.  We must inform, discuss and improve awareness.  We must remain positive in order to continue to inspire those who look to us for their care.

The issues raised by the recent Facebook study will need to be addressed.  Going forward, social media users, as well as those that manage major online networks such as facebook, twitter and YouTube (and others) must decide how and when to conduct social networking experiments in a way that provides both useful data and also protects the privacy and rights of those involved in the experiment itself.

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Providing The Best Care For Our Patients: Sometimes An Old Dog Must Learn A Few New Tricks

When I was in training at Duke University Medical Center, we prided ourselves on practicing evidence-based medicine.  During my tenure there, Dr Robert Califf had constructed the clinical research mecca known as the DCRI (Duke Clinical Research Institute).  As cardiology fellows in training, we were all actively engaged in clinical trials and quickly understood the importance of choosing therapies that had been proven to be safe and effective through rigorous evaluations in randomized controlled clinical trials.  (RCT).  In fact, when making rounds in the coronary care unit (CCU) with my attending physician, I can remember being chastised because I had prescribed an ACE inhibitor without mortality data rather than one that had been proven to save lives.  In the eyes of my attending,  I had wrongly assumed “class effect” and had used an unproven therapy.

This week in the New York Times, author Nicholas Bakalar explores the same issue in today’s medical practice.  In a recent publication in the Mayo Clinic Proceedingsinvestigators evaluated 10 years of published studies in a single high impact journal.   Of the studies evaluated, 367 represented an examination of a well established medical practice or therapy.  Surprisingly, 147 of these studies of established practices found that the accepted therapy was no better or even worse than the alternative treatment practice.  Of these well established treatment practices that were examined, nearly 40% were found to be ineffective or actually harmful to the patient.  However, physicians continued to utilize these particular therapies.  Why?  What can we do to effect changes in practice?

Old habits die hard.  Often, in medicine, the momentum it requires to make a change in practice can be overwhelming.  We often do things because mechanistically, they just make good sense.  Many physicians that are procedure-oriented like myself fall into the trap of believing that if we are able to impact the cause of a problem or change the course of the disease, that the outcomes will be improved.  This is not always the case.  For example, in the case of coronary artery disease, it makes sense that if we “un-block” an occluded coronary artery, we should be able to make the patient live longer.  In fact, the data clearly shows that angioplasty and stenting are valuable in relief of symptoms but have no impact on mortality.  This does not necessarily mean that we should not revascularize patients percutaneously BUT it does mean we must understand the true impact our revascularization procedure will have on the patient and their quality of life.

In medical school, most physicians were trained to think as scientists.  The scientific method suggests that scientists should evaluate a problem in the following manner:  1. ask a question, 2. make a hypothesis, 3. develop a “test” for the hypothesis and then 4. Collect and interpret the results.  As practicing physicians, we must continue to think like  scientists and look for evidence to guide our clinical decision making.  We must ensure that even if we believe that a particular treatment makes good biologic and mechanistic sense, it must still be proven effective by rigorous clinical trial evaluation–if it is not or if it is shown ineffective, we must find alternative therapies without delay.

Medicine remains an art.  The way in which we are trained has a significant impact on how we practice later in our careers.  In residency and fellowship, we are taught the current, state of the art therapies for that particular time.  Thankfully, medicine is not static–innovations and improvements in care occur almost every day.  We must learn to adapt to changes in the “state of the art” as medicine continues to advance.  A good scientist (and a good physician) continually evaluates the “state of the art” in order to see if there are better ways to treat and serve our patients.  It is essential that we continue to practice evidence based medicine and provide the best PROVEN therapies  (and reject those that are found to no longer be effective)–even if it means and “old dog” must learn a “new trick”

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