Social media is a powerful tool that oncology clinicians increasingly use to access emerging clinical evidence, engage with patients, and learn about experiences from the field. However, like any tool, it must be used deliberately, with an understanding of its limitations, to maximize benefits and avoid undesirable effects. This second blog in our Social Media and Quality Mini-Series describes how oncology clinicians are using social media, potential pitfalls, and recommendations for helping clinicians navigate the social media landscape to ultimately improve quality of care.
The observations outlined in this blog are derived from several years of Real Chemistry’s (formerly W2O) analysis of social media data drawn from a proprietary dataset that has mapped over 1 million key stakeholders (including clinicians, patients/caregivers, advocacy organizations, and health care industry leaders) across publicly available social media posts from major platforms (e.g., Twitter, open Facebook groups/pages, blogs, other forums).
How oncology clinicians use social media
Oncology clinicians learn about updated clinical guidance, cutting edge treatments, and developments about quality and payment policy in a variety of ways, such as conversations with colleagues and experts, peer-review publications, newsletters, and participation in professional society meetings. In recent years, social media has become a common medium for learning about developments in oncology care.
Oncology clinicians’ professional use of social media includes learning about emerging evidence from key online thoughts leaders (also known as key opinion leaders [KOLs]), engaging with patients/caregivers to offer information and understand their experiences, and monitoring important policy and regulatory changes.
Learning from KOLs. When oncology clinicians choose to follow KOLs on social media, a primary motivation is to stay up-to-date with information from the field of oncology. In an ever-evolving clinical landscape, social media offers a way to keep pace with the latest developments simply by tracking the online influencers who curate “must know” information. For example, a clinician interested in emerging treatment evidence could learn about a new research study from a KOL who is referencing sites such as Science Direct, Nature Research, and PubMed. This may be especially beneficial for community oncology clinicians whose primary focus is not research.
Engaging with patients and their caregivers. Social media can give oncology clinicians deeper insight into patient challenges and needs. Oncology clinicians learn from patient stories that they access by following advocacy organizations, support groups, patients and caregivers who are themselves KOLs, and other organizations that amplify patient experiences, like life sciences companies. Reading these stories can help clinicians better understand patient perspectives and experiences along the disease journey. In addition, oncology clinicians may amplify patient experiences by sharing posts with their own professional networks.
Oncology clinicians can engage with patients by posting educational information to their own social media accounts. Patient groups often work in tandem with clinician KOLs to disseminate the latest treatment and disease management news via digestible modules for general patient consumption. For example, KOLs may post educational information for clinicians and patients that they get from consumer-friendly sites such as Medivizor
Finally, social media offers an opportunity for oncology clinicians to promote their practices. Clinicians can post easy to access information on the services they offer, staff credentials and relevant experience, and supportive programming at their practices. For example, if a practice has a patient support group, a clinician could share this information on social media.
Connecting with the healthcare ecosystem. Through various social channels, oncology clinicians can follow professional societies, patient advocacy organizations, and other sources to monitor digital disease awareness events or campaigns or participate in online events and activities, such as research fundraising. In addition, clinicians can expand their awareness of policy debates about health care access and reimbursement. For example, in the day after the FDA approved a novel CAR-T cell therapy in late 2017, there were over 1500 posts on Twitter alone, with a number of notable clinician leaders focusing on the price of the treatment and questioning the effectiveness of the manufacturer’s value-based pricing model.
Risks of using social media
The benefits of social media are accompanied by risks, including that posted information is not reviewed for accuracy and may be biased toward certain points of view.
The “1-9-90 rule” posits that 1% of social media users create most of the content, 9% spread the content, and 90% consume the content. This means that oncology clinicians who use social media for clinical education are consuming information from a relatively small group of influencers. These influencers can disproportionately shape the broader conversation and, by extension, clinical practice.
This is problematic because social media is not moderated by a formal peer review process. While influencers might position themselves as experts, they may not always have the appropriate credentials and professional experience to validate the perspectives they share. Similarly, even credentialed experts can disseminate inaccurate information, and oncology clinicians may be reluctant to question prominent clinical leaders in a public forum. The problem may be compounded when oncology clinicians interact with patients via social media, as patients and caregivers often lack the expertise to assess whether information is accurate and relevant to their circumstances and clinical profiles. We will discuss how cancer patients interact with social media further in our next blog.
When clinicians seek to understand patient needs by engaging online, they may miss critical voices necessary to promote health equity, creating another potential pitfall. Like clinician influencers, patient influencers also represent a minority of the diverse patient population. Technologically savvy patients and caregivers who have the time and energy to post prolifically on social media may have resources, concerns, and values that are not universal for oncology patients. This may skew clinicians’ perceptions of patient needs.
Improving access to quality information and diverse voices
Professional societies, health systems, health plans, life sciences companies, and others have a role in ensuring that clinicians have access to accurate information that promotes high-quality care. These organizations can work to connect clinicians with reputable online resources, such as specific thought leaders, educational and advocacy websites, and patient support forums. Organizations should host social media training sessions for clinicians to educate them on the breadth of online discussion and how they can utilize the digital community to improve practice.
A professional society or research institution could elevate its online influence and help clinicians cut through the noise by ingesting information from multiple sources and taking on the role of peer reviewer for its own social media channel. The organization would need to think carefully about the practical (and possibly legal) implications of such an endeavor, but sites like Medivizor serve as examples of this approach. Similarly, guideline developers can leverage social media to share user-friendly information and collaborate with influencers to help moderate the discussion.
Oncology clinicians can learn much from listening to patients and caregivers on social media, including what experiences and outcomes may be important to capture in quality measurement. These methods should be accompanied by targeted interviews, surveys, or ethnographic research activities to ensure that we are hearing all voices in the diverse community of oncology patients and caregivers.
Social media offers oncology clinicians the opportunity to communicate and digest new information in near real time, allowing best practices to permeate care more rapidly than ever. Social media can also give oncology clinicians greater awareness of how patients and caregivers think and what is important to them, leading to more productive communication and shared decision-making conversations. The oncology quality community has a responsibility to help curate this deluge of information to ensure, to the extent possible, that oncology clinicians, patients, and caregivers have access to reliable and accurate information and diverse perspectives.
About the Quality Outlook Commentary Series
Breakthrough treatments in cancer care, including precision therapies tailored to specific patient factors, are driving rapid changes in the definitions of oncology quality and value. Efforts to implement value-based care models in oncology must meet the demands of evolving science, new best care practices, and shifting patient priorities. Quality measures must be up-to-date and relevant. Payment models must recognize the challenges and costs of managing complex patient populations with diverse needs. In this JCP blog series, Quality Outlook, Discern Health will explore key issues in oncology quality and value through posts focused on measurement, value-based payment, and quality improvement.
About Theresa Schmidt
Theresa Schmidt has more than a decade of experience in health care policy, quality, and health information technology. As a Vice President at Discern, she leverages a strong background in non-acute care, analytics, quality measures and quality improvement, value-based payment, and research to help Discern clients and partners achieve their business goals. Theresa has a diverse health care background and has held prior positions at the National Partnership for Hospice Innovation, Healthsperien, Avalere Health, and eHealth Data Solutions. She serves on the board of the Advancing Excellence in Long Term Care Collaborative.
About Justin Kerley
Justin Kerley has extensive experience working with healthcare data, from digital and social inputs, to primary research components. As a Director of Integrated Intelligence at Real Chemistry, he assists clients across the healthcare industry to solve their business questions through innovative analyses designed to provide actionable insights. With an educational background in history and criminal justice from Villanova University, Justin has always been fascinated by why people do the things they do. This passion has drawn him to the field of healthcare research, where he has developed a keen interest in understanding consumer health advances and outcomes. Justin is passionate about utilizing analytics to improve how healthcare providers and consumers communicate with one another and utilizing research across the drug life cycle to better connect novel therapeutics with those who need them most.
About Tom Valuck, MD, JD
Tom Valuck is a Partner at Discern Health. He is a thought leader on health care system transformation and helps lead the firm’s focus on achieving better health and health care outcomes at a lower cost. Tom’s work at Discern includes facilitating the exploration of next-generation measurement and accountability models for health care delivery systems. He also helps clients develop strategies to achieve success within the value-based marketplace.
About Discern Health
Discern Health is a consulting firm that works with clients across the private and public sectors to improve health and health care through quality-based payment and delivery models. These models align performance with incentives by rewarding doctors, hospitals, suppliers, and patients for working together to improve health care while lowering total costs.