As in the rest of modern life, social media is becoming impossible to ignore in modern medicine. To help clinicians navigate the ever-evolving online landscape and to show how social media may actually help advance clinical outcomes, two Education Sessions are being offered: ‘The Future Is Now: Incorporating Electronic Health Records, Web-Based Decision Tools, and Social Media into Your Clinical Practice,’ Sunday, 4:45 PM-6:00 PM in Room S504 and ‘Internet, Social Media, Privacy Regulations, and Clinical Trials,’ Monday, 1:15 PM-2:30 PM in S504.
“It used to be just fine that some clinicians who were Internet-savvy and interested would opt in, and others stuck with the status quo and did not get involved with the online world,” Michael Fisch, MD, MPH, a Speaker in today’s session and chair of the Department of General Oncology at The University of Texas MD Anderson Cancer Center told ASCO Daily News. “The status quo is no longer a safe place, and opting out is not a great idea moving forward.”
According to Dr. Fisch, clinicians who are not engaged online are often not aware of how their names, reputations, and ideas are being invoked and discussed. Colleagues and patients regularly use the Internet to search for information about doctors and key topics. Oncologists can shape and influence what patients and the lay public pay attention to online by establishing profiles on networking sites, such as LinkedIn and Doximity, by interacting on Twitter, and by contributing to blogs.
Physicians who want to increase awareness among the public or seek out colleagues through social media forums must understand how to prevent and manage the potential hazards in this realm, such as unprofessional online behavior running afoul of institutional and organizational guidelines governing these online interactions, Dr. Fisch said.
Beyond established social media avenues, clinicians should also think more about how they can maximize the value of other online experiences. For example, most web-based presentations or conference calls offer participants the option to interact (using the “chat” function) in real time. This provides a real opportunity for participants to become more engaged with each other and the presenters so that they enjoy and get more of out of the activity, Dr. Fisch said.
With increasing attention being paid to patient-reported outcomes, there has been considerable focus on improving methods to collect this data. Web-based platforms will make it easier for patients to supply information, and emerging technologies will be discussed during today’s session by Laura E. Strong, PhD.
Greater Patient Education
Social media and the Internet also provide unique opportunities to better engage with patients and the public who are searching for more information about cancer.
“While doctors are tentatively getting involved in social media, patients are getting involved far more aggressively and are establishing a structured environment of websites and forums,” said Michael A. Thompson, MD, PhD, Chair of today’s session, Speaker during tomorrow’s session, and medical director of Early Cancer Research at Aurora Health Care in Wisconsin. “These communities are evolving, and patients will be pushing us more.”
Clinicians and health systems should recognize opportunities for education, Dr. Thompson said. When a celebrity announces that he or she has a disease, there is a significant increase in online searches for more information about that condition. After broadcaster Tom Brokaw announced in February 2014 that he had multiple myeloma, Dana-Farber Cancer Institute published a blog post describing the disease with numerous links to treatment, current research, and clinical trials. This blog post has already been recirculated hundreds of times on Facebook and Twitter. Similar increases in interest occur during cancer awareness months.
“These are opportunities when the public and patients are looking for more information, and it would be great if knowledgeable people with expertise were available to answer questions or steer them in the direction of more information,” Dr. Thompson said in an interview with ASCO Daily News.
The desire among patients for more information was driven home for Oliver Bogler, PhD, senior vice president of Academic Affairs and professor of neurosurgery research at MD Anderson, in his unique position as both a cancer biologist and a male breast cancer survivor. A Speaker in tomorrow’s session, Dr. Bogler will explain his choice to chronicle his experiences in his blog malebreastcancerblog.org. The initial decision to start the blog was a cathartic exercise, but the rarity of breast cancer in men and his background in cancer research also turned it into an educational tool.
“I have had people say for the first time that they understand what drugs they are taking and how they work and that they found this information reassuring and helpful,” Dr. Bogler said. “One caregiver used a post I’d written about what it felt like to have a port placed to educate her own patients.”
Modern health care does not allow the time for in-depth explanations of the biology of the disease and the mechanisms of every treatment option to every patient. However, clinicians can direct patients to online resources where they can find information or support groups, and be available to answer more specific questions about each patient’s circumstances.
While undergoing treatment, Dr. Bogler was able to contrast his experiences with those of his wife, who is also a breast cancer survivor. Their medical regimens were nearly identical, but their experiences differed greatly because of the lack of understanding about breast cancer in men, even among clinicians. The blog and other outlets that have arisen from it have given him the opportunity to advocate for more education and greater inclusion of men in cancer trials.
“My unique niche is that I understand the biology, and I can stand up at a cancer meeting and ask if they included men in their study cohort and if not, why not,” Dr. Bogler said.
Social media has been an invaluable tool for this advocacy, including a Twitter discussion (TweetChat) where an audience participates in a virtual conversation through the use of hashtags, which are shorthand labels attached to messages that help link together information. Educating participants through these types of activities then enables them to educate others, creating a multiplicative effect.
“It’s remarkable to me that you can have a few hundred people who are really interested in the topic you are discussing for an hour,” Dr. Bogler said. “That’s like giving a lecture at ASCO, but you are reaching people around the world. That’s the power of social media that some physicians haven’t had time to think about.”
The use of hashtags can help to increase the “signal-to-noise ratio,” given the information available online, thereby narrowcasting to a targeted audience. Such techniques foster online communities even for rare diseases, providing both a support structure that could not occur geographically and gathering sufficient numbers of patients for research opportunities.
Dr. Thompson cited the example of The Mayo Clinic’s research on spontaneous coronary artery dissection. Patients with this rare condition had come together in an online forum, developed a research agenda, and then approached researchers at the Mayo Clinic, who seized the opportunity for study.
Tapping into these virtual communities could present other types of research opportunities, including the study of the efficacy of the groups themselves to determine how an online support structure affects adherence to therapy and depression, and whether web-based palliative care programs can be effective.
Improving Research, One Tweet at a Time
Social media may help answer a vexing problem in oncology research—how to improve accrual rates for clinical trials. ASCO Past President Sandra M. Swain, MD, noted this dilemma last year: “Only the 3% of patients who participate in clinical trials are able to contribute to advances in treatment,” meaning that 97% of cancer care does nothing to further understanding of the disease (at least prospectively in rigorous clinical trials).
“There are many barriers to accrual and one of them is lack of education,” Dr. Thompson said. “Social media is one tool that could be used to overcome that barrier and engage people more in discussions about clinical trials.”
Some research groups and hospitals, such as the Eastern Cooperative Oncology Group and the American College of Radiology Imaging Network (ECOG-ACRIN, @EAOnc) and Memorial Sloan Kettering Cancer Center (@sloan_kettering), are promoting their clinical trials through Twitter, while other organizations, such as ASCO (@ASCO), use Twitter to send general information about the importance of clinical trials.
Local institutional review boards may not allow the use of social media as an accrual tool for specific clinical trials, but in many cases, physicians can use Twitter or other social media to send hyperlinks to publicly available sites such as ClinicalTrials.Gov as a way to raise awareness about the availability of clinical trials, Dr. Thompson said.
“I don’t think we need every patient and every clinician to be on Twitter; we just need enough people to amplify the message and make sure it is understood that participation in clinical trials is a standard of care as a guideline recommendation from the National Comprehensive Cancer Network and that participating in a clinical trial is often the best available therapy a patient can get,” Dr. Thompson said.
Another challenge in recruitment for clinical trials is overcoming the so-called “Digital Divide,” which refers to differences in access to technology among patients, said Robert S. Miller, MD, Cancer.Net editor in chief and oncology medical information officer at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins. Although social media is a valuable communication tool, not all patients have readily available access to a computer or smartphone, and some patients may only have access to a smartphone, so sending information that is not optimized for a mobile device may limit their participation.
“When we talk about something like advertising a clinical trial on Twitter, we have to understand that there are populations that have varying levels of access to that information,” Dr. Miller, who will be speaking in Monday’s Education Session, told ASCO Daily News.
In trying to address these barriers, researchers should consider the potential for using electronic health records (EHRs) and patient portals in concert with other options for education and recruitment. For example, in the near future, a researcher affiliated with a large health network might be able to use information within the network patients’ EHR to identify suitable patients for a planned clinical trial, then use the patient portal to communicate to the patients that the characteristics of their disease make them eligible to participate in a trial and provide more information, Dr. Miller said. Another possibility would be using the EHR for data mining to identify areas for future research.
With any of these new approaches to communication, there is a need for oversight to preserve patient confidentiality and to adhere to the principles of the Health Insurance Portability and Accountability Act, Dr. Miller said. Standards would need to be established to prevent coercion to enroll in a trial, or having patients share too much information while participating in a study.
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