Guiding the Way

MDNG Pediatrics, March 2011, Volume 13, Issue 1

Patients are self diagnosing by turning to the internet more frequently instead of speaking to their physicians.

With so many health-related sites populating the Internet, it's becoming more important for physicians to know where patients--and their families--are going for information, and to help steer them in the right direction.

By Kate Gamble

The roles of physicians and patients used to be very clearly defined. Patients and their families turned to physicians seeking treatment for a condition, as well as information about how to manage it, and for the most part, relied fully on the physician’s advice.

When health information started to become available on the Internet, the game changed drastically, and the relationship between physicians and patients began to evolve into more of a partnership. It’s a change that many physicians are still getting used to, according to Bryan Vartabedian, MD, assistant professor of pediatrics at Baylor College of Medicine in Houston, TX, and attending physician at Texas Children’s Hospital.

“We’re on the cusp of a revolution,” Vartabedian says. “For many years, doctors had a stranglehold on information. All of that changed when patients developed unrestricted access to information.” As patients become less dependent, many physicians fear they’ve lost some of the control they once had in the clinical encounter. And that can be scary.

For example, a few years ago, Vartabedian sat down with the mother of a young patient to discuss her test results, which had detected eosinophils in the upper intestinal tract. Rather than listen to his explanation, however, the patient’s mother asked him how to spell the terms so she could look up the information on the Internet.

And although many physicians, including Vartabedian, are strongly in favor of patients using the Internet to become more educated, there are downsides to patients having an alternate source for health information—the most important being an inability to filter out information that is unreliable or downright inaccurate, he says.

One way that Vartabedian deals with this is by launching what he calls “a preemptive strike.” In other words, when he informs a patient’s family that he or she has a certain condition, he also tells them what information they will find online, including what might scare them and what should be ignored.

“I’ve seen this again and again, so when I have a biopsy finding, I tell parents that they are going to find a lot of information about parasites that will not be relevant to their child’s condition,” he notes. “With an understanding of what they’re going to see when they do a Google search, I try to prepare families for what may be relevant and what may not. Because I know that the questions are going to come on the next visit, and I want to be proactive with these patients.”

Vartabedian will also guide patients—or in most cases, their parents—to specific sites that he has found to be reliable, realizing that although they might not follow his advice, they do appreciate being pointed in the right direction.

The power of online communities

When patients and their loved ones do decide to consult Dr. Google, it is often like rolling the dice in terms of the content they find. Although Google searches often generate reliable results from organizations like the National Institutes of Health and the Mayo Clinic, they can also take patients to the message board section of a health-based social network.

The problem with this, according to Elissa Weitzman, ScD, MSc, assistant professor at the Children’s Hospital Informatics Program at Children’s Hospital Boston, is that in many senses, online communities are like the Wild West. “They’re maturing rapidly, but unlike with other communications channels, there really isn’t a mechanism in place by which you can judge the content,” she says.

In a study (http://hcp.lv/fFxHCF) published in JAMA, Weitzman and three colleagues from Children’s Hospital Boston evaluated the quality and safety of 10 popular social networking sites for patients with diabetes. The researchers examined the websites in terms of accessibility and readability of privacy policies; alignment of website content with science and clinical practice recommendations; sharing of users’ personal information; and monitoring of content for accuracy.

The goal was to make sure the content offered by online communities mirrored “the information being provided by physicians, diabetes organizations, or journal article websites in terms of the standards of care endorsed by the field of medicine,” says Weitzman. “This is a disease where we’re lucky enough to have good indicators and good definitions of core biomarkers and metrics that are pretty easy to find. We wanted to know if this information was percolating through.”

What the authors found in their evaluation were significant variations in the quality of information and privacy protections across the sites. According to the study results, only half of the sites presented content consistent with diabetes science and clinical practice, and fewer sites offered both scientific accuracy and strategies to protect patients. Seven of the sites didn’t allow users to place limits on the visibility of their personal profiles, and of the nine sites that included advertisements, five featured unlabeled ads and three featured ads for “cures.”

Calling Dr. Google

A growing number of patients are turning to the Internet for support. According to a recent report (http://hcp.lv/fXOBMi) by the Pew Internet Project and California HealthCare Foundation, 23% of Internet users with a chronic condition have gone online to connect with others who have similar health issues.

In light of these findings, Weitzman and colleagues stressed the need for increased oversight, an external review process, more clearly disclosed conflicts of interest, and privacy policies that are more easily understood. One suggestion would be to create a system in which physicians can earn credits by monitoring sites for content.

“We recognize that this is a very different medium and that it has great appeal,” she says. “The intent is not to close it down, but to encourage a model where administrators, patient advocates, and representatives from organizations could form a peer-review structure.”

One of the surprising outcomes of the study for Weitzman was the realization of how powerful online health communities have become. “I was surprised and really impressed by the incredible commitment on the part of the members,” she notes. “Diabetes requires intensive daily management and places a heavy burden on individuals to track a lot of complex information. But there is a remarkable trove of information and a real spirit of commitment to helping each other that is present in these communities.”

Vartabedian agrees, adding that online communities can provide a valuable service by addressing concerns and questions from parents that fall outside of the clinical realm. “As a pediatric gastroenterologist, I can talk to parents about the child’s linear growth and the risk for lymphoma, but there are some things that I can’t help with,” he says. “For example, how do you have the dialogue with an 8-year-old girl about what she can and can’t eat at a birthday party? That’s where these patient communities are so powerful.”

And it’s why it has become so critical for providers to understand the benefits and pitfalls of online communities, as well as the influence they have over patients and their families.

“Any given doctor should know what patients are going to find when they search key terms with respect to the diseases they treat. Helping patients and parents understand what they may find, and helping them deal with that is a great strategy,” says Vartabedian. He believes that the next great phase in physicians’ understanding of the medical Internet and social networking sites is going to focus on filtering information for patients “in a way that allows them to seek good information. The curation of information is where the future lies as far as online health information.”

Rise of the Physician Blogger

When Bunny Ellerin, co-founder of NYC Health Business Leaders and president of Ellerin Health Media, started working closely with physicians nearly two decades ago, the communication dynamic was quite different than it is today. For the most part, she says, “physicians were pretty closed off in that they only spoke to each other about clinical topics, and wouldn’t really go outside those walls.”

The walls, it’s safe to say, have come down, according to Ellerin, who examined the online behaviors of 10 physicians in a 2010 report titled, “The Social Physician” (http://hcp.lv/gs6Z5L). What she found was that physicians of all ages are spending time online, whether that entails blogging, tweeting, or posting videos. “It’s very interesting because I never would’ve expected the doctors that I worked with early in my career to engage in social media or a public forum,” she says. “The openness and the willingness of physicians to engage and put their views out there is intriguing.”

According to Ellerin, there are several key factors behind the newfound openness among physicians, primarily the following:

1. Educating patients

By now, most physicians have had patients present to an appointment with information they’ve found on the Internet about a condition that either doesn’t pertain to their particular situation or is downright inaccurate. Physicians, therefore, are taking it upon themselves to right these wrongs, says Ellerin. “They’re interested in getting good, vetted, clinically accurate, medically sound information out to their patients.”

And not just to their patients in particular, but to a much wider audience, she notes, adding that providers sometimes get so many calls about a health news story—such as immunizations or breastfeeding recommendations—that it becomes more efficient to write a blog post than to address the topic with each individual patient. “This way, they can direct patients to the blog and discuss it with them,” says Ellerin. “It’s all about creating relationships and respect and trust.”

2. Taking a stand

Another common reason for blogging is for physicians to make their opinions known, particularly about timely topics like health reform or liability issues. “They want a seat at the table,” she says. “Not being able to voice their opinion on important issues just doesn’t serve them well. They need to get their point of view out there.”

3. Showing some personality

Some physicians have embraced social networks and blogs as a way to shed some life on the life of a physician and invite patients into their world, Ellerin notes. For instance, those who follow Jennifer Dyer, MD, a pediatric endocrinologist based in Columbus, OH, on Twitter can learn about her love for food and travel. Similarly, Stephen Lemon, MD, an Omaha, NE-based oncologist, often shares his thoughts on movies, restaurants, and pop culture topics on his Twitter page, and many other physicians are following suit.

4. Marketing

Finally, for a growing number of physicians, blogging offers an opportunity to grow the practice. Bryan Vartabedian, MD, a Houston, TX-based pediatric gastroenterologist who is also an avid blogger (http://hcp.lv/idWFg1), believes that for pediatricians and other physicians in rural areas, blogging can be part of a marketing strategy. “If I were a small-town pediatrician out in the community, there’s no question I would probably have a blog and I’d be doing one or two posts a week,” he says. “It’s a great way to improve the digital footprint that all doctors need to be thinking about.