Monthly Archives: June 2014

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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Data is (Em)Power(ment) for Patients: Using Fit Bit to Impact Disease Management

For scientists and researchers who are developing new treatments for disease, Data is power.  For patients, Data can mean empowerment.  Devices that track health indicators are readily available.  These devices can track heart rate, blood pressure, blood sugar and even respiratory rate and body temperature.

This week in the Wall Street Journal, the medical applications of the Fit Bit device are explored.  The Fit Bit is a basic pedometer that tracks movement, steps taken, calories consumed and (in certain models) sleep habits.  This device is commercially available for around 100 dollars and was initially embraced by serious athletes in order to improve performance.  Now, according to researchers, these devices may be able to impact health outcomes–both inside and outside of the hospital or healthcare setting.  These impacts may forever change how physicians and healthcare systems think about managing chronic disease.

As I have mentioned in previous blogs, I firmly believe that smartphone applications for medicine are going to be a part of mainstream medical practice in the coming years.  Providers will prescribe apps just as they do pharmaceuticals.  In the case of the Fit Bit device and others like it, data obtained from physiologic monitoring can be used to assess physical fitness and progress towards obtaining specific health goals.  In several recent studies, researchers at Massachusetts General Hospital in Boston, have found that the Fit Bit users who have diabetes are more likely to have better control of their blood sugars and achieve weight loss related goals better than those who do not use the device.  Many patients with type 2 diabetes can better control their blood sugars through reduction in BMI (body mass index) and the data provided from the Fit Bit device seems to have a positive correlation with weight loss in this particular patient sample.  In the hospital setting, researchers at the Mayo clinic found that in post-operative cardiac surgery patients, the Fit Bit was able to identify patients that needed more physical therapy intervention–by tracking movement in the early post-operative days.  It is likely that by identifying and intervening early in patients who are not progressing after surgery we will be able to prevent many common complications such as deep vein thrombosis (DVT), pneumonia and other morbidities associated with lack of activity after surgery.

At this point, the FDA has no immediate plan for regulation as long as they are not specifically created to treat a particular medical condition or disease process–however, I do expect regulators to act on all types of biomedical data collection devices within the next 5 years.  According to the WSJ, the health monitoring device industry is projected to exceed 5 billion dollars in 2016–largely due to our focus on patient engagement and prevention.  Concerns have been raised as to the security of data and as to the reliability of the data generated by these devices.  As with most new medical innovations, there is still much work to be done.  We must create secure servers where patient’s data can be safely deposited (and HIPAA compliant) and easily accessed by their healthcare providers in order to provide necessary changes to care.  In addition, the patient must be able to access their own data in order to assess progress, adjust goals and optimize their lifestyle changes in order to produce better health outcomes.  Additional concerns have been raised around the legal implications of a large repository of medical and physiologic data—are physicians responsible for every reading and every piece of data in the repository?  Will there be frivolous lawsuits initiated by ambulance chasers (or Fit BIt chasers) in the future?

I contend that more data is better.  Data provides me with the power to make better decisions for my patients.  Data provides my patients with real, meaningful feedback.  When we are sick, we often feel as though we have lost the ability to determine our own destiny and lose any semblance of control.  Data allows patients with chronic illness to actually regain some sense of control—and achieve ownership of their disease with the power to invoke change.

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Making Donald Ross Proud: Erik Compton Overcomes Adversity (and Two Heart Transplants) to Compete in the US Open

This week, the center of the golfing universe is centered on Pinehurst, North Carolina as the United States Open Championships get underway on Thursday.  Designed by Donald Ross and frequented by golf legends such as Bobby Jones, Harvie Ward and Ben Hogan, Pinehurst number 2 is an iconic layout for professionals and amateurs alike.  Golf, in general, takes meticulous preparation, dedication, discipline–and for those who are successful at the highest levels–an uncanny ability to battle and overcome adversity.  As a below average amateur golfer, I certainly have a healthy respect for the abilities of PGA professionals.

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These men and women spend countless hours practicing and perfecting swings and are quickly able to assess their own weaknesses and move to correct them in a timely fashion.  The world of sports can teach us many life lessons and can help better prepare us to do battle in our daily lives.  The traits of successful professional golfers are applicable to medicine in many ways.  Sports figures have always been a source of inspiration for me.  This week, one particular golfer in the US Open field should serve as an inspiration for us all—PGA professional Erik Compton’s daily courage and his willingness to overcome any obstacle can help each of us meet even the fiercest medical or business related challenges and provide better care for our patients.

At age 9, Erik Compton was like any other child.  He was active and loved sports.  However, he became ill with a cold like illness (just like many other kids that age).  Unfortunately, Erik’s cold symptoms lingered.  He began to become very short of breath and was no longer able to keep up with other kids his age.  Eventually he was evaluated by a specialist and found to have viral myocarditis and a significantly reduced left ventricular ejection fraction.  After three years of therapy and worsening congestive heart failure, Mr Compton was listed for a heart transplant and in 1999, he received a new heart.  Through hard work, goal minded behavior and dedication, Erik led a relatively normal life through high school and became one of the top ranked amateur golfers in the United States at the high school level.  He was recruited by many universities and attended the University of Georgia on a full athletic scholarship.  As a college golfer, Mr Compton not only battled the numerous golf courses, bunkers, water hazards and the like, but also battled fatigue and swallowed numerous anti-rejection pills each day. He worked his way onto the Nationwide Tour and eventually earned his PGA card.  Unfortunately, Mr Compton suffered a massive myocardial infarction (MI) in 2007 and was left with another cardiomyopathy in his transplanted heart.  While driving himself to the hospital from the golf course, he called his family to say goodbye.  The goodbyes were not to be–six months later, he received a second heart transplant.

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(Photo adapted from http://www.ErikCompton.com)

At this point, many of us would have simply given up.  “Why me?” we might ask.  Instead, Mr Compton embraced his next life challenge.  Within weeks, he began to walk and exercise regularly and he was determined to play competitive golf once again.

Mr Compton battled back from a second heart transplant and ultimately re-joined the PGA Tour.  Last season, he was awarded the inaugural PGA Tour Courage Award.  Two weeks ago, he sunk a putt in a sudden death playoff in order to qualify for the US Open field.  Mr Compton’s story is compelling for many reasons.  As a golfer and transplant survivor, he exhibits unnatural courage under duress.  For patients and physicians, Mr Compton’s example can provide insight into successfully battling disease and should inspire us all to do better with whatever gifts we are given.  I have never heard Mr Compton complain during an interview–rather, he chooses to focus on the positive–the fact that he is able to once again compete on the PGA Tour and he clearly enjoys EVERY single day, EVERY single minute.

Most importantly, Mr Compton’s story should serve as a call to action for all of us–we must do more to raise awareness for organ donations.  Last year, there were more than 4000 persons on the active transplant waiting list–yet only 2600 heart transplants actually occurred.  Every single year, patients die while waiting for an organ.  Factors such as blood type, body size and other immune system antigen compatibilities often determine how quickly patients are able to receive a heart.  Organ donation is simple–in most states it simply requires answering a question on your driver’s license application.  Organ donors are critical to providing life to those with diseases such as Mr Compton.  Fortunately, through innovation and research we have other therapies that can help patients with end stage cardiomyopathies–Left ventricular assist devices (LVADs) can now serve as destination therapy as well as a bridge to transplant in critically ill patients.  Although the artificial heart has not yet panned out as we would have liked, the advent of 3D printing of organs may hold real promise for the future.  However, until we have other solid alternatives, we must continue to raise awareness for organ donations and work to ensure that more people on the transplant list have organs available to them.  As healthcare workers, we must include questions on organ donation as part of our routine office visits in order to ensure that our patients are at least AWARE of the process and can contemplate decisions with their families while they are young and healthy.

Ultimately, many will die while awaiting organs this year.  Patients and families who have donated during times of tragedy are true heroes–they have provided LIFE for others from the hands of tragic and untimely death.  This week, I continue to be amazed at the ability of PGA golfers to tame the beast that is the historic Pinehurst number 2.  I am even more amazed by the fact that Erik Compton is among the field and walking in the footsteps of Donald Ross, Ben Hogan, Harvie Ward and Bobby Jones.  I think each of these golf legends would be quite proud. In fact, I suspect that Donald Ross himself would enjoy a round with Mr Compton—and would likely invite him to sit in the rockers on the world famous porch at the Pinecrest Inn (a legendary hotel in the village of Pinehurst once owned by Mr Ross) after an afternoon walk on Pinehurst Number 2.

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(Image from my personal collection.  Golfers from all over the world come to Pinehurst for a round of golf and recount the day on the course on the porch at the Pinecrest Inn)