Is Social Media Engagement Empowering or Dangerous for Cancer Patients and Their Caregivers?

Introduction

Cancer treatment is complicated, and countless sources of information and support are available. With the rise of social media, many cancer patients and their caregivers are using it to seek insight into disease progression, treatment options, psychosocial support, and guidance for navigating care. Social media platforms expand patient and caregiver access to information from experts and other patients; however, information from these sources may be inaccurate, misleading, or geared toward some clinical profiles while ignoring others.

This third blog in our Social Media and Quality Mini-Series explores the dynamics of patient and caregiver engagement via social media and considers how quality measures and other quality tools can help maximize the benefits of social media while reducing the risks. We will also discuss how exploring patterns of social media engagement can help inform health care quality research by revealing how patients and caregivers define quality and value in their own words.

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 more than a million key stakeholders—including clinicians, patients and caregivers, advocacy organizations, and health care industry leaders—across publicly available social media posts from major platforms (e.g., Twitter, open Facebook groups and pages, blogs, other forums).

How patients and caregivers use social media

Engaging with social media allows patients and caregivers to learn from the experiences of others in similar circumstances and absorb the expertise of physician influencers and other health care professionals. It can enable patients and caregivers to be better prepared for what to expect along their own care pathway, including informing potential treatment options, and thus supporting shared decision-making with their health care professionals.

Connecting with leading patient and caregiver voices. Oncology has a robust patient and caregiver community, with many who dedicate their time and energy to keeping up-to-date with the latest research and passing that information on to the wider community. The resources and “starter guides” that these seasoned and educated leaders share provide other patients a head start in preparing for their own medical appointments. Some patient and caregiver leaders have created resource-driven websites, Facebook groups (e.g. “ColonTown” for colorectal cancer patients), or ongoing Twitter chats to provide repositories for knowledge sharing and ensure the information is easily accessible.  

Through social media posts and linked resources, patients can learn critical skills, such as how to:

• Advocate for themselves in clinical settings and with payers,
• Identify physician experts and seek out additional opinions,
• Navigate financial challenges,
• Assemble a broad care team, and
• Track and understand their various symptoms and test results.

In addition to information, patients and caregivers may also seek social or psychological support from  support groups, such as Healingwell.com, Healthunlocked.com, and cancer forums on Reddit.

Connecting with health care professionals. Following physician leaders online offers patients and caregivers an even deeper dive into the oncology landscape. By regularly tracking the discussions of academic and clinical thought leaders, patients and caregivers can keep abreast of the treatments available for their specific diseases and better understand their options.

Patients and caregivers can also interact directly with clinical leaders through live online chats (e.g., via Twitter) or similar Q&A formats (e.g., Reddit’s “Ask Docs”). Via these chats, verified oncologists or other health care professionals offer direct advice on disease management strategies and direct questioners to other resources. Patients and caregivers can also receive patient-friendly guidance via consumption of digital media resources produced by physician leaders or oncology organizations (e.g. Patient Power) for patients. Therefore, patients and caregivers are finding more avenues to sift through and digest relevant information in whatever format is most convenient for their daily lives.

Risks of patient engagement via social media

Patients, caregivers, and the oncology community should recognize and mitigate several risks that may arise when patients and caregivers seek information about oncology on social media.

A key risk is that the information shared online may not be comprehensive or fully accurate.  As discussed in our last blog, a small minority of influencers create the majority of content, and posts are not moderated by a peer-review process. This means that only some news stories or research findings will be promoted on social media and widely disseminated. This also means that some patient and clinician influencers may share inaccurate or misleading information about treatment, payment, or symptom management. Patients and caregivers are not always equipped to evaluate the accuracy of the information provided by these influencers, and acting on inaccurate information can have detrimental physical, emotional, or financial impacts for patients and caregivers.

Another risk is that a post may not include enough context for a patient or caregiver to recognize that a given case study or experience may not apply to their own situation. Patients may mistakenly assume that disease management strategies or treatment approaches that have worked for other patients will work for them, when their own genetic, clinical, and social profiles might be quite different. This can be exacerbated when Information shared by experts on social media is not easily digestible for patients and caregivers.

Finally, in the fast-moving oncology treatment landscape, some patients and caregivers may be left behind. The professional online oncology community consistently rewards innovation and cutting-edge technologies, which are often geared toward targeted therapies and more personalized diagnostics. However, less attention is given to patients who do not fit molecular targets of personalized diagnostics, or for whom no therapies are currently in the research and development pipeline. Thus, patients who have fewer treatment options based on their clinical profiles may not have the same access to robust resources and guidance from online thought leaders focused on the latest breakthroughs.

Similarly, not all patients and caregivers have the same access to social media, the ability to use it, or speak the languages used in prominent oncology platforms. Because social determinants of health extend to the online community, promoting patient engagement via social media may also promote disparities in health literacy, shared decision-making, experience of care, and patient outcomes.

Directions for quality

The goal of maximizing the benefits of social media for patients and caregivers, while minimizing the risks, has several implications for oncology quality and quality measurement. Quality improvement initiatives may focus on promoting the use of social media resources that lead to better care and outcomes. Moreover, quality measurement may benefit from “crowdsourcing” definitions of value derived from social media.

Improving access to quality information. Policymakers or measure developers can encourage physicians to refer patients to appropriate information sources by including social media discussions as part of a patient education or communication-related quality measure or improvement activity that meets the requirements of the Merit-based Incentive Payment System. For example, the Experience of Care survey used in the Oncology Care Model includes an Exchanging Information measure that might be expanded to reference educational resources, including social media resources.

As we discussed in our last blog related to provider resources, stakeholders (e.g., professional societies, health systems, health plans, life sciences companies) can play a leadership role in overseeing or peer-reviewing experts’ posts that are intended for patient and caregiver consumption or hosting forums that offer patients access to accurate information from reputable sources. Stakeholders can also monitor the landscape for disinformation and collaborate on campaigns to correct common misperceptions.

Measuring value. The first edition of this mini-series focused on the potential for developing quality measures from social media data. Even before measure development, a rigorous review of patient and caregiver conversations in social media can help identify what is meaningful to patients for those interested in measuring value. Social media listening might uncover access barriers, poor care experience, and troublesome symptoms, along with physical, social, psychological, and financial burdens.

Advancing equity. All quality initiatives, including those above, must consider the diversity of oncology patients and caregivers. Simply offering a list of Facebook groups or online influencers to meet the criteria of an improvement activity does not ensure a patient or caregiver can access those groups or meaningfully interact with them. Likewise, review of social media data to understand patient values may exclude the voices of people who are not part of the online community. Stakeholders must work to increase access to online resources, help contextualize what patients are learning, offer other options to engage, and leverage other research methodologies to reach a broader patient population.

Conclusions

Social media allows patients to seek guidance from experts who would typically be beyond their reach and engage with other patients to help them set expectations, contextualize their experience, and receive support. The oncology quality community can work to connect patients with high-quality resources, combat dangerous disinformation, promote equity, and explore social media as a data source to expand our knowledge of what is meaningful to patients and caregivers.   

What common misconceptions about oncology would you address if you could reach more patients and caregivers via social media? Do oncology clinicians have a responsibility to help their patients navigate the cancer social media landscape? Please submit your comments using the form below.

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, part of Real Chemistry, 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, MA, has more than a decade of experience in health care policy, quality, and health information technology. As a Vice President at Discern, part of Real Chemistry, 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, part of Real Chemistry. 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

, part of Real Chemistry, uses research and strategic advisory services to help our clients improve health and health care through value-based payment and delivery models. These models align performance with incentives by rewarding doctors, hospitals, suppliers, and patients for working together to improve quality while lowering total costs. Real Chemistry is an independent provider of analytics-driven, digital-first research, marketing services, and communications to the healthcare sector.