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Voices of Geisel

Physicians navigating the social media penumbra

By Stuart W Grande, MPA and Annemijn Aarts, MD, PHD

Social media is changing the practice of medicine. Online platforms, such as Twitter, Facebook, Google+, and Instagram provide patients with opportunities to share their illness experiences, ask personal health questions, and achieve unprecedented access to health information. Social media also allows for knowledge and case-based sharing among health professionals. While The American College of Physicians supports the use of e-health activities to advance patient-centered care, are physicians ready to participate?

Stuart W Grande is a researcher with The Dartmouth Institute for Health Policy and Clinical Practice, and Annemijn Aarts was a Visiting Clinical scholar from Radboud University Medical Center, Nijmegen, The Netherlands.

Mounting evidence describes the benefits of Social Networking Sites (SNS) to link the needs and interests of patients—in addition to communicating with their doctors online, patients are also seeking peer support and health related information. Interestingly, the Institute of Medicine found that of social media users willing to share their medical data, 94 percent of these believe their health data should be used to improve the care of other patients. If 94 percent of social media users in the United States agree that sharing health data online with doctors to improve care is a good idea, this trend may be worthy of attention.

However, not everyone agrees it is.

The Controversy
An increasing number of physicians are embracing the use of social media platforms in addition to usual care. For instance, studies indicate that giving patients online access to (parts of) their medical records results in more informed and actively involved patients, leading to a better patient-provider relationship. Extending communication with a patient beyond traditional care may contribute to further strengthening that relationship. In terms of patient-centered care, health care delivery could be tailored more appropriately to patients' needs because social media can be a valuable online resource to learn more about patients' experiences.

Our sense is there seems to be a palpable fear of data being misused either by patients or physicians. This raises the question of how medically relevant data should be shared via social media and whether or not patients and providers should draw the line. In fact, determining whether patients or providers are indeed fearful of their data being shared or misused is hard to know.

And yet David Shaywitz, a physician who writes about medical entrepreneurship for Forbes magazine, contends that physicians may be hesitant about using social media because they fear its influence on the practice of medicine. He notes that patients may receive and share erroneous information presumably gleaned from non-evidence based sources, and that physicians may interact poorly with those patients. Further, there is a risk that physicians may also unsuspectingly breach hospital policy when sharing information.

Our sense is there seems to be a palpable fear of data being misused either by patients or physicians. This raises the question of how medically relevant data should be shared via social media and whether or not patients and providers should draw the line. In fact, determining whether patients or providers are indeed fearful of their data being shared or misused is hard to know.

Sharing health-related data and information is something patients already do with or without the blessing of health professionals. Most reports from patients suggest their motives are primarily to clarify information, seek reassurance, and explore options. And many patients do seek to communicate with their doctors online because they trust them to share accurate and reliable information. Our conversations with patients confirm this. Yet, we're sure there are patients interested in uncovering provider shortcomings or sharing horror stories from the emergency room.

Consider the patient who has something to prove. They may have had a bad experience in a hospital and feel they need to share it on social media by posting an offensive review of their physician or service. Their post may go unnoticed, but depending on the forum, an overly provocative post may have the potential to "go viral." We must recognize that the free flowing nature of the social media space contributes to the limited control doctors or patients have over information once it's shared.

My Dartmouth colleague John Naslund and I have found that patients who post comments on YouTube often do so to come to the rescue of those patients who have been publicly berated. This research suggests that naturally occurring online communities of patients do more good than harm. Others believe that patients who turn to online communities for information do so because they do not trust the health care system. Indications from those who have studied online patient behavior and online patient communities reveal that lack of trust is only part of the story.

If people learn more about illness from these communities, and then bring questions to their physician, how could this be a bad thing?

The forms and types of data shared publically are evidence of changing social norms, but the reality of patients using social media as a viable communication platform with their physicians is controversial. Despite the potential benefits for social media, questions of quality and veracity of data remain. For researchers this is fascinating and opens new avenues for investigation into technologically driven social behavior.

A new form of care
Making distinctions between the type of information shared and the platforms used seems to be a critical component for establishing boundaries. Many of us find some value in sharing peer-reviewed papers, innovative techniques, and compelling stories as a way to engage with and learn from each other. What differentiates personal sites from private or public sites is disclosure. How you choose your sites may indeed reflect how you use them. Some questions to consider may include: Who has access? Can patients or colleagues see what my friends post? Can I create a private group? How safe is the information I post? For example, I may believe Facebook and Instagram are effective for personal use while Twitter and LinkedIn may be, arguably, more professional platforms. While these choices are neither clear nor consistent, we would certainly recommend that organizations, especially hospitals, require an effective and overt policy to establish clear boundaries between the public and private.

We know from patient reports that physicians dominate much of the conversation during clinical visits and according to Dominick Frosch—a Fellow in the Patient Care Program in the Gordon and Betty Moore Foundation—many patients don't have an opportunity to speak up during these consultations. Would using social media improve the way patients interact with doctors and vice versa? This is hard to say, but one thing is certain, advances in social media have modified the ways patients seek health information and their involvement in treatment decisions. The BMJ, formerly the British Medical Journal, reports that social media use among health professionals is increasing and is being used to meet growing patient demands. A recent article in the Wall Street Journal by Eric Topol, director of the Scripps Translations Science Institute and an advocate of digital health care, concedes smartphones and social media are shifting the power balance in health care.

Using social media to improve medicine
Physicians can either choose to turn their heads to these growing trends or learn to use them to their advantage. The controversy escalates when the debate changes from access to medical information to concerns related to the quality and reliability of information. It is reassuring that many platforms like Wikipedia are putting resources together to be more transparent about the sources of the information. Perhaps physician fears of patients accessing the wrong information will leverage more physician involvement in providing patients with reliable online sources of information.

Physicians using Wikipedia or any other social media to access medical information is no longer shocking given the staggering amount of new literature published daily. Many leaders in the field believe it is simply too difficult to keep up with all the studies available and are calling for streamlining the systematic review process and allowing open access to clinicians and patients—a signal that perhaps transformative research and transparency go hand in hand. Patient expectations of clinicians to possess absolute knowledge could be overwhelming, not to mention impossible. Clearly, expectations surrounding clinical expertise are over emphasized and this is where the benefits afforded by social media as a space for knowledge exchange and transparency is important for managing public expectations.

The future of medicine?
Clinicians could benefit from utilizing social media in many ways. First, as previously noted, several studies have shown that the Internet has the ability to empower patients. Second, social media offers opportunities for clinicians to help each other. One example is EMCrit.org, a website/podcast devoted to emergency medicine, managed by Scott Weingart, an ED doc in New York City. Michael Lauria, a a second-year Geisel student who introduced me to the site, remarked that it is a place where experts in trauma and emergency medicine can share and exchange information about publications, procedures, and evidence freely, often recognizing the excellent work of others in the field. As advocated, this streamlined approach to assessing reams of data into manageable and understandable chunks is made possible by online technology and social media.

The future of social media and medicine appears to be positive given the necessity to differentiate expectations, clarify roles, and verify information. Done well, social media may indeed help improve health outcomes for patients as long as there remain checks and balances in place that provide a filter for offensive and harmful information. Physicians can also benefit from sharing pertinent and relevant case-related data as a means of improving patient care. In this way, perhaps, respecting the transparency of shared experiences, recognizing the value that online medicine brings to patients and clinicians, we can all step out of the shadows and accept that social media is here to stay.

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