Patient Education Reinvented in the Digital Age

“Information posted online [can lead] parents to a diagnosis and enable them to find a group of physicians capable of treating their child.”

With technology come both risks and rewards. The Internet and social media provide countless new opportunities to educate patients and improve health care but pose significant liability threats for individual clinicians and the health care profession as a whole if they are misused. Without a doubt, authoritative health information and social media sites dedicated to serving the specific needs of patients can be of significant benefit. I refer to my own experience as a vivid example.

Through a colleague in another specialty, I evaluate an unusually large number of patients with symptoms of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAs). In my assessment of their history, I find that nearly every one of the parents has arrived at the diagnosis after searching online for information about sudden onset behavioral problems in their child and has stumbled across PANDAs or pediatric acute-onset neuropsychiatric syndrome. This discovery then leads them to social networking sites, where they find stories similar to their own. That information, in turn, leads them to lists of physicians who know about PANDAs, and other parents’ experiences with the physicians. More often than not, when parents bring these findings to their primary care physicians they get a blank stare and an admission that the physician knows nothing about the disease. The thing I find so fascinating is that information posted online led these parents to the diagnosis and enabled them to find a group of physicians capable of and interested in treating their children.

Authoritative Information

This experience has really solidified for me the importance of the development of authoritative websites by academies, physicians and other health care providers who are dedicated to diagnosing and treating specific diseases or syndromes. These sites provide an invaluable service to our patients. A 2011 Pew study found that 80 percent of Internet users look for health-related data. This number reinforces the need to provide factual and easily understood information online for our patients. It is easy, however, to fall into the trap of giving advice to parents or patients without first establishing a patient-physician relationship. Clinicians who blog increase their liability risk if they do not adhere strictly to guidelines that govern professional interactions via social media and electronic information systems.

Recent guidelines have been published by the American College of Physicians (Ann Intern Med. 2013;158:620-627). The document outlines behavior for social media, as well as any form of electronic information. In today’s digital world, health care information is difficult to keep confidential. Once it is “out there” it cannot be retrieved, and the damage caused by releasing the information may be ongoing for the patient and clinician. As health care providers, we are held to a very high standard by the Health Insurance Portability and Accountability Act, which is continually being upgraded and revised. This law has teeth, and if the standards are violated, clinicians can be fined, go to prison and/or lose their license to practice medicine.

E-Mail Etiquette

Now, let’s talk about e-mail for a moment. E-mail can supplement, but should not replace, a face-to-face encounter. With established patients, some types of information sent via e-mail can significantly improve efficiency, communication and patient satisfaction. There is certain information that is factual, difficult to misinterpret and conveniently delivered through an e-mail. One must use discretion, however, with regard to specific patients and content; it goes without saying that it is probably not a good idea to deliver the diagnosis of cancer to a patient through an e-mail.