ASH Clinical News ACN_5.1_Digital - Page 35

FEATURE promoted anti-vaccination sentiments. 3 Moreover, 45 percent of consumers claim information on social media would affect the likelihood that they’d seek second opinions, while 40 percent said it would influence the way they manage chronic conditions or diet and exercise. 4 The documented power of social media was one of the factors that drove Dr. Yates to join Twitter. “I felt the re- sponsibility to provide information to my patients and to patients around the world,” she told ASH Clinical News. “We need to provide patient education in the forums where patients are talking to each other. If we’re not willing to go into these spaces where our patients are talking about these issues, then it’s partly our fault that there is such bad information out there.” She acknowledged, though, that it can be an uphill battle. Her strategy is to “overwhelm the system with good information,” by sharing new research or linking to patient resources from advo- cacy organizations. “As physicians, we have the potential to change what shows up first when patients are searching for information [about their conditions],” Dr. Yates said. A New Type of Networking Through Facebook groups and hashtags, patients have formed groups to seek advice and support from other people living with the same condition. For social media–savvy doctors, it also is an op- portunity to learn more about how their patients experience the diseases they treat. Jerad Gardner, MD (@JMGardnerMD), from the University of Arkansas for Medical Sciences and chair of Social Media Subcommittees for the United States and Canadian Academy of Pathology, told ASH Clinical News that, in his experience, patients often appreciate having a doctor’s perspective in these groups. The first Facebook group Dr. Gardner joined was for people diagnosed with a tumor called dermatofibrosarcoma pro- tuberans. When he answered a question a group member posted, he also acknowl- edged that he “wasn’t sure if [he] should be in the group, since [he] is not a patient.” His concerns were allayed when the group’s founder responded gratefully, telling him that, in the six years of the group’s existence, he was the only medical professional to join and offer information or ask patients about living with the disease. “That blew me away,” Dr. Gardner said. “I realized that [engaging with patients through] social media is a way that we can help people – especially those with rare diseases – feel more empowered about their disease. Many doctors still don’t even know that these groups are out there, which is kind of sad, because I think it is a way for us to help patients, as well as a huge resource for us.” He has expanded his social media reach to about 17,000 followers on Twit- ASHClinicalNews.org ter by joining groups formed around the diseases he studies. In his spare time, he’ll respond to questions users have posted in the forums. However, he recommended that clinicians set careful boundaries and manage expectations about how much help they can offer. General questions are OK, he said, but doctors need to be clear that they cannot offer medical advice without actually seeing a patient. Instead, these in- teractions should help patients have more informed, empowered discussions with their personal doctors. When using Facebook, Ruben Mesa, MD (@mpdrc), a panelist at the session and director of the UT Health San Antonio MD Anderson Cancer Center, also urged practi- tioners to join these types of groups – rather than creating new ones – for another reason. “It’s always important that these groups are created and stewarded by patients them- selves so that there is no perceived conflict of interest that we are creating something just for our professional benefit.” Leveraging Social Media Patients in these groups derive benefit from sharing their experiences with each other, but their reach can extend beyond closed Facebook groups, according to Dr. Mesa, because these groups are “natural reservoirs” for patients who may be inter- ested in participating in clinical trials. “Rather than waiting for [potential study participants] to show up to my clinic,” he said, “I can put the word out there.” That includes sharing patient re- cruitment materials and information about a trial in “patient-friendly” terms. Sharing videos about the trial, its purpose, and how it works through social media “makes it much more ‘real’ for people and is more powerful than [showing patients] a website with enrollment criteria,” he said. He referenced a recent study in which his center participated that evaluated the benefits of online yoga for symptom management for patients with myelopro- liferative neoplasms. 5 Within one week of posting the opportunity on social media channels, more than 400 people tried to register for the interventional, Institutional Review Board–approved study. Clinical trial accrual is incredibly important, he said. “It helps [researchers’] careers, it helps the center, and it helps to meet the goals of those studies to identify whether a drug is active.” Leveraging social media for research makes sense, he continued, especially for communities of people with rare diseases. Digital Scholarship Doctors also form their own groups on social media, for professional and personal support and to discuss the unique experi- ences of being a practitioner. “We’re seeing more and more activity in closed groups,” Teresa Chan, MD (@TChanMD), an assistant professor in emergency medicine at McMaster University who also spoke at the ASH annual meeting session, told ASH Clinical News. For example, Dr. Chan is a member of the “Physician Moms” group, which has tens of thousands of members. As one user wrote, the group is “a main source of sup- port for being a doctor and mother,” while another praised the group for sharing con- tinuing medical education opportunities. “Social media is revolutionizing the way we are educating and reaching people,” Dr. Chan noted. During her talk at the ASH annual meeting, she discussed “digital scholarship,” and the growing use of social media in medical education. “For a long time, independent practice was seen as a solo enterprise, [but now] we see physicians wanting to engage with the world and talk about the exploding amount of research,” she explained. “[Social media] allows doctors to meet patients where they are. ... We need to provide patient education in the forums where patients are talking to each other.” —AMBER YATES, MD Researchers, clinicians, and investiga- tors use Twitter hashtags to discuss new research in their fields of interest or to live-tweet scientific meetings to a global au- dience. With this type of curation, conver- sations can continue long after the meeting has ended. (Alternatively, introductions on Twitter can turn into real-life meetings that may never have happened due to schedu- ling conflicts or geographic constraints. Search any meeting hashtag and you’re sure to also see photos tagged with #TweetUp (or “a meetup for Tweeters”) or #mottirl (or “Met on Twitter Then in Real Life”). “Just as the basic scientists are doing really cool discovery work, so too can we advance the cause in linking people to that knowledge,” Dr. Chan said. “As medical educators, we need more people who are interested in advocating and sharing their knowledge online.” She urged attendees to engage with digital scholarship, building their academic portfolios and amplify- ing their message by sharing workshops and lectures on sites like MedEdPORTAL, an open-access clearinghouse of peer- reviewed teaching and learning resources published by the Association of American Medical Colleges. The proliferation of health-care related blogs, podcasts, and online communities sends a clear message that doctors have carved out a space for themselves in the so- cial media landscape, and now is the time to start critically appraising that material, Dr. Chan said. Several tools have emerged in recent years designed to evaluate how doctors are using nontraditional online education resources (like social media groups, podcasts, and journal clubs) – and how successful they are. As part of the METRIQ podcast study, for example, Dr. Chan and other medical educators developed a quality-assessment tool to help trainees evaluate these types of resources. 6 In another project, they evaluated the reliability and validity of the Academic Life in Emergency Medicine’s Approved Instructional Resources score, finding that the five-question tool gave medical educators an easy way to critically appraise online content. 7 Through this research, Dr. Chan and colleagues developed general criteria for evaluating nontraditional educational material: “It must be original, advance the field by building, be archived, and include a method for the community to share transparent feedback.” Point-of-Care Apps While social media offers broad access to communities of patients, caregivers, and colleagues to help doctors facilitate discussions, many doctors have also begun using applications built for more special- ized purposes. According to a 2014 report, doctors spend an average of three hours each week watching continuing medical education videos, and 85 percent reported using their phones at least once a day for clinical purposes. 8 The same study showed that 38 percent of the time that doctors spent on their smartphones was using professional apps, such as the physicians-only site Doxim- ity. However, in her experience, Dr. Chan said, when doctors reach for their mobile devices in the clinic, “it’s usually to look at quick reference guides, or information that they can use to teach patients or trainees.” A scan of the iTunes Store charts bears this out: The most popular point-of-care apps are reference apps, like the ASH Pocket Guides on specific diseases. Dr. Yates, who also works in emergency medi- cine, said these types of apps are helpful because she doesn’t always know which patients will be in the clinic each day. “If I see a patient with von Willebrand disease – which is not my specialty – I will pull up the ASH Pocket Guide for von Willebrand disease on my phone,” she explained. Dr. Yates found one of her other favorite ASH Clinical News 33