Physicians, Risk and Opportunity in the Digital Age

This is a general narrative of Pediatric Grand Rounds on risk and opportunity delivered at Texas Children’s Hospital on December 2nd, 2011. I have included select graphics that were used during the presentation.

I want to thank Dr. Mark Ward for inviting me to speak here at Pediatric Grand Rounds. The dilemmas and concerns surrounding physicians and social media need more discussion.

By way of background you could say that I’m here by accident. In 2006 I wrote a book for parents on reflux disease and milk allergy. At the time it was suggested that I start a blog to promote the book. I created a site, Parenting Solved, to offer practical commentary on issues of child health. I grew the site between 2006 and 2009 and during that time learned the value of a personal platform as a means of reaching the world.

Out of sheer curiosity I began experimenting with Twitter in 2008. In 2009 I noticed a sharp increase in social media use by physicians. With this increased adoption, basic questions began to arise such as, “What do you do when a patient contacts you on Facebook?” I launched 33 charts, a site dedicated to the issues facing doctors at the intersection of medicine and social media. The site grew and evolved as a community for matters involving doctors, social media and emerging technology. I’ve been fortunate to have the opportunity to help a number of organizations with their strategy and policy surrounding doctors and social media. I’m hoping to share with you a little of what I have learned.

In academic presentations there’s always presumed authority on the part of the speaker. But I’ll disclose that I’m not an ethicist. This may offer a distinct advantage to the audience: I look at these problems from a very basic and practical level.

I’ll open with a little background on social health and how it’s redefining the role of the physician. I’ll then transition into some of the challenges and questions that physicians face including transparency, boundaries of the doctor/patient relationship and the moral obligation to participate. There are so many questions evolving surrounding new media and doctors but I’m unable to discuss all of them. Hopefully this grand rounds will serve as a jumping off point for a discussion that will continue at Texas Children’s Hospital, Baylor College of Medicine and beyond.

Hopefully I won’t overpower you. This graphic from David Armano illustrates how we can go to extremes and overstate the value of social media. Many of us begin in an unhealthy place of thinking this is a fad. We’re skeptical then we check it out. There’s the potential to get too wrapped up with it but hopefully we convert toward a healthier place and recognize its real value. I showed this to my wife who suggested that I’m somewhere between a zealot and humble servant. But I’ll let you decide.

The physician redefined

This is a remarkable time to be in medicine. We’re in the midst of a communication revolution not seen since the time of the printing press. The world is changing around us. What we do 50 years from now will be unrecognizable to today’s generation of doctors. What it means to be a doctor is changing very quickly. This includes the way we communicate. I see 3 forces acting to redefine the physician.

Technology – The first force pulling on us is technology. Much of what we once did with our hands is now done for us. Advances in diagnostic imaging and genomics are leaving us as purveyors and interpreters of information. Times have changed: We once could only treat symptoms and diseases. In the 21st century we will move toward personalizing and preventing disease. Clayton Christiansen in his book Innovator’s Prescription describes this as a transition from intuitive to precision medicine.

Third party – Another force shaping doctors is third party control. Care is increasingly under administrative/centralized control through managed care, evidence based guidelines and the collection of big data. And given the seemingly unlimited availability of diagnostic options that I just described, 3rd party input would almost seem to be a necessity.

Health 2.0. Patients themselves are changing and they are, in turn, influencing us. Perhaps the most influential force in the modern redefinition of the physician is the health 2.0 movement. Health 2.0 is the use of social applications and other web-based tools to facilitate collaboration among patients and between doctors and patients.

For the better part of modern civilization our role as physician has centered around privileged access to information and knowledge. But the web has created a type of disintermediation. Patients can do more on their own. They can access information and make certain judgments. They can share information and adjust what they’re doing based on the input of others. And the physician encounter is evolving as a more narrowly defined element in an individual’s quest to understand their condition and get better. This health 2.0 element is fueled by social media.

So in effect, what we see are a variety of social and technological forces conspiring to redefine the physician. I believe that how we react professionally to these forces over the next generation will help shape who we become.

A short history of social health

So how did it come to this? How is it that patients who were once entirely dependent upon us began to become so independent dependent? I created this visual to briefly illustrate the course of social health over the past 10-15 years.

Long ago – Throughout most of modern civilization and up until about a decade ago, patients did what they were told. They would show up in our office, we’d tell them what to do and they were on their way.
The 90’s – Then came the Internet. Patients acquired access to information, initially through static sites and hyperlinks, then in the mid-90’s through search.
Turn of the century – Technology then allowed us to talk back and have dialog. Social networks appeared and patients started getting together.
Now – Information finds patients (and doctors). And this is all through social media.

What’s important here is that long ago patients went looking for information; now health information finds them through their social networks. You may hear the term web 1.0 used – this refers to this period when we passively read. The shift to web 2.0 happened when we went from reading to active participation.

What is social media?

It’s interesting how things have changed. Two years ago I had to spend a lot of time defining social media. Most of us live with it and so it requires a lot less effort on my part. While you’ll never get two people to firmly agree on the definition of social media, think of it as content made by you using mobile or web technologies that facilitates interaction.

This graphic from David Armano illustrates how information flow has evolved from a one-way broadcast to a network of conversations.

When I grew up in Boston as a child we had two sources of information: Walter Cronkhite and the Boston Globe (the big green “1”). Each morning the Globe editors decided what my family needed to know and sent it to us. Each evening Walter Cronkhite would decide what we should hear and we would hear it. We’d listen and that was it. From the time of the printing press, this is how the world worked. Broadcaster and audience. As suggested by journalist A.J. Liebling, it was freedom of the press … for those who owned one.

Then we saw the appearance of social applications that allowed us to publish our own ideas. A society once entirely dependent upon the mainstream media for their information has in the span of a decade or so developed the capacity to create its own communication channels. The audience has become the broadcaster. For physicians this has created tremendous opportunity as well as some pitfalls.

Physicians and social media

So physicians have used these tools just like everyone else and it seems we’ve been slow to adopt. But good information about physician use is hard to come by. This independent study, Doctors, Patients and Social Media released by Quantia this fall is one of the most comprehensive and it revealed these use statistics:

Facebook: professional use 15%; personal 61%
YouTube: professional use 8%; personal 31%
Twitter: professional use 3%: personal 9%. Note that this is personal use of Twitter is consistent with use in the US which is around 8%.

While doctors may be using these tools we really don’t have reliable information regarding what they’re doing. This October 2010 survey by the American College of Surgeons demonstrates nicely one of the weaknesses we see with statistics surrounding social media use by doctors: meaningful use. While they found that 22% of surgeons “use Twitter,” further analysis shows that half of these doctors rarely use it. We don’t have good information surrounding precisely how physicians are using these tools.

Speaking of surgeons, let me digress and tell you about one of our own in the world of medical education: Dr. Mary Brandt. Mary maintains a blog, Wellness Rounds, focused on wellness for trainees. From recipes to advice on personal balance, this site offers sensible advice for frenetic medical students. As important as the content she delivers is the view offered inside the leadership of Baylor College of Medicine. If you search Baylor College of Medicine on Google you’ll find Mary’s site on page one. Pre-medical students searching Baylor College of Medicine will, of course, find the requisite information on the medical school’s site. But her blog offers students a first-hand look at the administration’s commitment to the well-being of its students.

We shouldn’t underestimate the value of this kind of presence. This is where the next generation lives. And to be competitive as a medical school we have to live in their space.

My view of physician social activity

This diagram illustrates how I see the social world of physicians. When I think about doctors and the social spaces they occupy I think about two general areas:

Facilitated networks: These are doctor-only networks like Sermo, Physician Connect, and Doximity. These are applications designed to facilitate professional discussion.
Doctors in the wild. Then there is what doctors do in public places like Twitter, Facebook and YouTube.

The personal use of tools like Twitter and Facebook are precisely what you might expect. Soft professional dialog is the dialog about medicine but not direct patient-related dialog (health care reform, medicine in the news, etc).

I see professional dialog as the conversation surrounding specific studies, education and doctor-to-doctor sharing/collaboration.Professional dialog is the thinnest slice of the public dialog. Doctor-patient interactions appear limited to education and general health information. You’ll find little, if any, patient-specific dialog between doctors and patients. You’ll notice that among most doctors in the wild, there is a clear overlap in personal and professional dialog.

This diagram hopefully illustrates one of the biggest challenges facing this generation of doctors: the definition of professional boundaries. Maintaining our image used to be pretty easy. We kept a certain demeanor in the hospital and in the exam room and that was all we had to worry about. And physicians were seen one way. We were always encouraged to keep a deep and clearly defined ‘therapeutic distance’ from our patients. Messaging about doctors came from the AMA or the public relations office of the local hospital. Pictures, quotes and words were carefully chosen. Even the media played a role in defining the image of what constitutes ‘doctor-like’ appearance and conduct.

But the democratization of media has made each physician an independent publisher. We’re hearing from doctors with all kinds of opinions, ideas and agendas. Just a decade ago few physicians had a voice – now every physician is potentially a broadcaster or journalist. While this should be seen as cause for celebration it has lead others to have concern.

Technology leads the human process

This graphic illustrates the challenge that comes with such rapid change. What we see is that technology is now way ahead of the doctors, the law and any dialog surrounding ethics. This discrepancy between progress and it’s human follow through creates gaps that we’re not prepared to deal with. This will be a recurring theme. Our current systems are modified at a 20th century pace.

John Halamka, a physician and CIO at Harvard Medical School, wrote last week that “technology is easy, policy and processes are the hard part.”

Patient Privacy and Professionalism

With respect to social media, I see two challenges facing our profession: patient privacy and professionalism. There are others we could identify but I think that these two occupy the minds of those watching doctors in public.

Privacy is relatively easy.
Professionalism is remarkably difficult.

I’ve noticed that health institutions tend to focus on patient privacy almost at the exclusion of professionalism. The privacy issue is pretty straightforward: Avoid patient-related subject matter in public dialog. Period.

Why should we avoid discussing our patients in public?

These are public places. While the world ponders ‘how to handle doctors and their social tools’, it’s important to understand that tools for communication don’t change the standards of patient privacy. And privacy concerns are not new. But I don’t want to appear cavalier – real time communication carries with it new challenges never before faced by doctors. The role of new media physician publisher comes with new responsibilities. We just have to remind ourselves that these places are very much public.
Documentation is tricky. Documentation of dialog on fragmented communication channels is difficult to impossible.
De-identification is difficult. Proper de-identification of patient information is difficult. It’s also important to understand that what’s de-identified today may well not be de-identified in 5 years. Computers with access to big public data will be likely to be able to make connections between disparate pieces of information.

Here’s an example of just how difficult de-identification can be. This spring a doctor in Rhode Island recounted a patient experience and believed she had de-identified the patient. Apparently it wasn’t neutralized quite enough and the family members of the patient were able to identify this as a loved one. She was disciplined by the Rhode Island State Board and lost her privileges at the involved hospital. Again, avoiding the discussion altogether would have kept this doc from the professional pain she experienced. More importantly she would upheld the implicit agreement that her encounter was strictly between her and the patient.

So we work to be HIPAA compliant. Then we’re off the hook then, right? Maybe not. Consider that I’m on service and see a really interesting new case of neonatal hemochromatosis in the NICU. So I decide to share on Twitter: “Just saw an amazing new case of neonatal hemochromatosis. Not sure the little fella’s going to make it.”

Anyone see any problems with this?

We can argue that this doesn’t violate HIPAA and is, in turn, safe. But what if this patient happens to follow me and makes the connection that it’s her baby that’s being discussed. I suspect that a lot of patients would have a problem with this. Potentially this sort of ambient documentation represents a breach of trust. Call it a HIPAA-compliant breach of trust. Physicians must think beyond HIPAA in their public dialog. Our obligation to the relationship we share with our patients goes beyond legislation.

When patients reach out

So what should you do when a patient reaches out to you? Recently a patient reached out on Twitter with a medication question. I had apparently seen the patient the day before and they couldn’t recall how to dose the suppository I had prescribed. This is a pretty rare occurrence for me but it has happened a few times. And admittedly this happens far more often at the grocery store than it does on line.

So how should you handle it? Here’s a mini-protocol that I initiate when patients reach out:

Take the dialog off-line. The first thing I do is take the dialog off-line. I’ll message back and tell them that I can’t respond here but would love to chat.
Address their concern. I then try to take care of their problem. It’s important to understand for a digital native mother, outreach on Facebook isn’t some kind of novelty. To everyone in this audience it is, but not to her. This isn’t a fad. It’s one of the world’s leading communication platforms.
Discuss PHI. After I address their issue, I’ll discuss why I can’t discuss protected health information in public places. Then I remind them about the potential downside to the public disclosure of medical details.
Create a phone note. Finally, I put it all in a phone note. And very importantly I document that it was the patient that initiated the public contact.

A couple of things are worth noting here. This father who sent the suppository tweet didn’t know that everyone who follows the two of us can see his @message. He didn’t understand what was private and what wasn’t. This is something that I’ve seen pretty regularly: Patients often don’t understand the privacy settings of common social media applications.

It also makes sense to have a communication policy that lays out the expectations for how your office would like to communicate with patients.

Here’s a situation I once faced: One day I was friended on Facebook by a woman from my community. I didn’t know who she was so I messaged back and asked how we knew one another. She responded that we didn’t know one another but she had read my book and she had a 9-week-old screaming baby whose intake was limited to 12 oz.

So what do you do? Keep in mind that this is a public, non-protected medium. The hospital compliance officer is looking over my shoulder. The Texas State Board prohibits care without the maintenance of a proper medical record. I chose to call her and see her in the office the next day. Fortunately this kind of contact is pretty rare. But since I had responded to her request I was engaged and felt the obligation to help out.

When patients talk about you

You can’t talk about patients but can they talk about you? Absolutely. With the rise of physician-specific review sites patients have a forum for commenting on everything from the front-end staff to your dress. But as it turns out, physician review sites are typically polarized between those that either love or hate the doctor-in-question. Consequently physician review sites have not evolved as the tool that the empowered patient had hoped.

Negative comments can arise, however. It’s important to keep in mind that as a doctor you have no control over what people say about you. But what you can control is the content that you create. If you create nothing you are entirely at the mercy of what’s created or said about you on your behalf. You have to look at yourself as being responsible for the creation of a positive digital footprint. This is one argument for participating in social media a positive, meaningful way.

The doctor discussed in this post on 33 charts chose to sue a patient who published what she considered to be an unfair comment. The result was that the story was picked up by every major news outlet and the world then wanted to see what had been said. So while this doctor was trying to get rid of some negative commentary, the end result was a digital trail strewn with news stories about how she handles criticism. She even made Grand Rounds this morning at Texas Children’s Hospital. This is an example of what’s been called the Streisand effect. Sometimes our best efforts to eliminate something from the web have the opposite effect.

Professionalism

The issue of defining professionalism in the digital world has been difficult because professional conduct is subjective. Definitions vary across generations and cultures and ultimately the question of professionalism will need to be defined within the community or network of the participating doctor. This discussion is part of a broader debate surrounding personal boundaries and transparency. How transparent is too transparent? And what does my professional, social and IRL community expect of me?

It’s an important question since institutions charged with monitoring physician conduct must make this judgment. But at the end of the day it’s important to keep in mind that social media is just another public space. For the individual physician the solution is simple: always remember that the world and, more important, your community is watching.

Can we separate our personal and professional lives?

Many have advocated for ‘dual citizenship’ online – a separation of our personal and professional lives. But I think that it’s difficult to achieve. We have to be careful believing that what we say and what we create will be contained to a limited audience. In an environment where anything can be screen grabbed and shared, the use of what we create is at the whim of the person who consumes it. I assume that online dialog on any platform has the potential to be seen by everyone’s eyes.

Regarding patients and Facebook, I try to restrict Facebook to people I would normally have for dinner.

Deviant Doctors on Twitter

The risk of talking about ethical dilemmas in social media comes with the potential appearance that the wheels are falling off the wagon. So are doctors really that bad? Is this discussion about professionalism overrated and do we know anything about what doctors are doing? Our knowledge about physician conduct is limited but this study by Kathy Chretien at George Washington offered some interesting insight into how frequently physicians engage in questionable conduct on Twitter.

She studied 5,156 tweets from physicians and found that 144 contained what was deemed unprofessional content. It’s interesting to note that 92% of the doctors responsible for what was judged as potential disclosure of PHI used their full names in their Twitter bios.

As a side note, Kathy is an example of an academic physician who is adding to our professional body of knowledge while serving as stellar example of a physician voice in social media. You can follow her on Twitter at @MotherinMed. Her blog, Mothers in Medicine, offers up fresh writing from young female physicians.

In the context of Kathy Chretien’s study is Dr. Wendy Sue Swanson’s observation that ‘We are way worse in the elevator than we are online.’ Wendy, a blogger for Seattle Children’s Hospital, also serves as a brilliant example of how an original voice can leverage the power of social media for positive messaging. If you are interested in understanding how pediatricians can harness the power of social media be sure to read Wendy’s writing and watch her videos.

Is anonymity the answer?

So perhaps the doctors in this study who potentially disclosed PHI would have been safe had they just used a pseudonym? But true anonymity is a relic of the digital past. Just about anyone can be identified. And while it’s been argued that anonymity allows a safe outlet for the persecuted, it just as easily creates a situation where a physician entrusted with the private affairs of a patient is accountable to no one. The issue of anonymity and the individual rights of those who are truly oppressed remains an unsettled issue.

It’s interesting to note that anonymity among physicians was more common in the early days of the medical blogosphere (early 2000’s). In fact, the first facilitated network for physicians in the United States, Sermo, launched in October 2006 and allowed anonymous profiles and continues to in 2011. Anonymous profiles in facilitated networks for physicians are otherwise unheard of today.

The risks of anonymous physician opinion are best illustrated in the case of Dr. Rob Lindeman, a Boston-based pediatrician who maintained a very active blog in the mid-2000’s. He was a fantastic writer with sharp opinions that offered insight into the mind of a working pediatrician. He wrote under the name of Flea, after the famed Red Hot Chili Peppers rocker. He went to trial to defend a case in 2007 and chose to blog his opinion on the personal habits of the female plaintiff attorney. He was identified and confronted during the trial. The case made every major newspaper in the free world and now serves as a cautionary tale for good judgment and the risks of presumed anonymity.

So what’s the problem with anonymity?

It’s an illusion. While it was once possible to maintain true anonymity, anyone can be uncovered.
It creates a false sense of security.
It creates the mindset for saying things that your normally wouldn’t (and probably shouldn’t) say. I have always believed that if you can’t stand behind what you have to say perhaps you should stay seated. I think this probably stands as solid advice for physicians in the new world of social media.

Digital natives in the medical world

We’re facing a new problem in professional medical education: The appearance of digital natives in medicine. We are witnessing the matriculation of residents who have been raised with real-time communication. And in a world of health privacy legislation, institutional accountability and analog attendings, there have been growing pains.

The way to train the next generation is not to prohibit the media but rather to teach how we can live with it as professionals.

I saw the writing on the wall earlier this spring and called Lee Aase at the Mayo Clinic Center for Social Media and suggested that we put together a video for incoming medical residents on the issue of digital professionalism. So I gathered Victor Montori from the Mayo Clinic, Wendy Swanson from Seattle Children’s, and Kathy Chretien and we put this together and launched it on the first of July. It’s simple but the idea was to give young trainees a little advice from a group of socially docs and generate some dialog about this important issue.

The video enjoyed wonderful visibility and met its goal of creating chatter. The Wall Street Journal Health Blog covered the story. Of note, this is a good example of how you can use social media to leverage the mainstream media. We are planning to re-release this video in a more polished form for the 2012 academic year.

Are physicians morally obligated to participate in social dialog?

I first raised this question in 2009 and it generated a lot of dialog. I’ll submit to you that as physicians we are obligated to create, curate and talk. I like to raise the example of vaccines and autism. When a frightened young mother searches ‘vaccines’ and ‘autism’ she finds exactly what you’d expect: The shrill from a loud minority that has done its best to turn back two generations of effort to eliminate dangerous infectious diseases in children. Consider that there are 60,000 pediatricians in the American Academy of Pediatricians. If just once a year each one of these 60,000 pediatricians wrote, commented on or recorded some piece of information dispelling a vaccine myth we would rule the search engines.

It’s interesting that as physicians are the first to criticize what patients read but we’re the last to create it. Public education is part of our charge. We have an obligation to do better.

Texas Children’s Hospital’s Medicine | Milestones | Miracles is doing its part to create the content that parents should read. Since its launch last year Michael Reina and Chris Ferris in marketing have done a tremendous job cultivating a world-class center of dialog for those invested in child health. Each one of you in this audience can use this remarkable platform to harness and share the wealth of information that you have within you. This post by Rachel Cunningham represents how we all should be creating the stories surrounding vaccine preventable disease.

While there’s more that can be said you might take home these four tips for safe engagement:

Avoid patient specific issues
Don’t be anonymous.
Remember that everyone’s watching.
Be nice.

Risk and opportunity

I’ll finish by sharing an observation: Almost universally when speaking to physicians and health care administrators, social media is seen from the perspective of risk and fear. Almost never is it viewed from the position of opportunity. While clearly we need to mitigate the risks involved in public dialog we need to recognize it as a remarkable opportunity. Medicine and the world around us is changing very quickly. How we respond to these changes will define our profession over the next generation.

Links to Amazon represent affiliate links. Dr. Vartabedian has an advisory relationship with Doximity.