BY ALAINA CYR
Patient Education Coordinator, Princess Margaret Hospital, Toronto
Questions on whether or not health care providers should use social media have focused on concern over breach of privacy and liability, which remain among the top cited concerns keeping medical professionals from using these platforms in their practice, according to surveys.1 But, despite these concerns, clinicians should not discount the benefits both they and their patients can reap, while not avoiding confidentiality fears altogether.
The ability to find and connect with like-minded people in real time, regardless of geographic differences, is one of the most advantageous features of social networking—and would be difficult to replicate offline.
Patients have long been connecting online via social networking and online communities, and recent research proves the positive results. Online communities allow patients to amass a variety of perspectives on the latest cancer treatments, coping, and managing side effects to make more informed decisions they are more comfortable with, according to a review article in Current Oncology.2 As those authors noted, “Cancer patients value practical and experiential information from other patients, which has been reported to be an important component of symptom management among breast cancer patients,” and online communities provide a simple way to find other patients, especially in rare diseases.
Concerns about bad medical information shared through online communities causing harm to patients lack reliable evidence. Online communities thrive when members feel supported and feel a sense of belonging—where they are contributing to a greater purpose and talking about new experiences and ideas.3 For patient communities, part of this means trusting other members and feeling connected to each other. Without a sense of deeper connection between members, patient communities are quickly abandoned. “Researchers have demonstrated that users of online communities are competent at deciphering ’good’ from ‘bad’ information, put considerable effort into ensuring that the information shared is accurate, and correct questionable or misleading statements as they occur.”2
For Healthcare Providers
Medical professionals and researchers can use social networking to stay abreast about the latest updates in cancer research, in prevention, diagnosis, and treatment. It can take years from the time a clinical trial is completed until the research is published, and as a result, many patients who could have been saved by the latest treatments miss out.4 When researchers and health care providers connect online, it can, at the very least, get research findings into the hands of health care providers as soon as it is published. Ideally, research implications could be communicated to medical professionals once research data has been analyzed, though the methodology and results would still need to be examined for validity and rigor.
Social media tools are being used more and more to disseminate clinical findings to health care providers. A recent longitudinal study published in the Journal of Medical Internet Research found that the number of “tweetations” (the number of times a scholarly article was linked to on Twitter) a scholarly article received predicted how often the article would be cited in other scholarly articles.5 As the author of that study, Gunther Eysenbach, points out, “tweetations” measure social impact and knowledge translation, while citations measure scholarly impact. It’s unclear if the relationship is cause and effect—the more “tweetations”, the more researchers are made aware of the article—or if more “tweetations” relate to the relevance of the research. In either case, there is no doubt that medical professionals can use tools like Twitter to stay informed about the research making noise in their fields.
For Better Research
Social media can help power improved research by better recruiting specific patients needed for clinical trials. A recent editorial in the Journal of Thoracic Oncology discusses how researchers benefit from online patient communities. West and Camidge explain that as cancers become categorized by molecular subtype, it becomes challenging to conduct the much-needed trials that advance knowledge and improve treatment options: “Patients are geographically diluted, and even a large centre may only see one or two cases of a particular molecular subtype in a given year.” By targeting existing patients communities, researchers help spread the word about their trials: “Online patient communities can now be leveraged to partner with clinical researchers in getting patients appropriately informed [about available clinical trials] and motivated [to participate].”
Research conducted in Australia explored using paid advertisements on Facebook to recruit young women into a health study. Findings indicated that the cost of advertising through the popular platform was about $20 per compliant participant, a reasonable rate compared with the $20 - $500 per compliant participant spent on more traditional recruitment methods (for example, TV or radio ads, face-to-face, or direct mail). Though this strategy may not be the best method for targeting specific cancer types, it could be useful for recruiting from the general population, especially if targeting a specific demographic or geographical group.
Still wary of social media? Here’s a short list of social media tools for the medical community:
● QuantiaMD - videosharing site for doctors and health providers
● Sermo.com - private social networking site for doctors
● nurseconnect.com - social networking site for nurses
- Bender JL, et al. Supporting cancer patients through the continuum of care: a view from the age of social networks and computer-mediated communication. Current Oncology 2008;15(S2);S42-S47
- Millington R. The 4 Fundamental Things a Community Provides Its Members. The Online Community Guide: How to grow thriving online communities; posted December 2010. http://www.feverbee.com/2010/12/the-4-fundamental-things-a-community-provides-its-members.html
- Ferguson T. e-Patients Scholars Working Group. e-Patients: How they can help us heal health care. 2007 http://e-patients.net/e-Patients_White_Paper.pdf
- Eysenbach G. Can Tweets Predict Citations? Metrics of Social Impact Based on Twitter and Correlation with Traditional Metrics of Scientific Impact. Journal of Medical Internet Research 2011;13(4):e123
- DeBronkart D; Meet e-Patient Dave (video). TED.com; posted June 2011. http://www.ted.com/talks/dave_debronkart_meet_e_patient_dave.html
- Fenner Y, et al. Web-Based Recruiting for Health Research Using a Social Networking Site: An Exploratory Study. Journal of Medical Internet Research 2012;14(1):e20
- West H, Camidge DR. Have Mutation, Will Travel: Utilizing Online Patient Communities and New Trial Strategies to Optimize Clinical Research in the Era of Molecularly Diverse Oncology. J Thoracic Oncology 2012;7:482-484