The Promises and Perils of Social Media for Pediatric Rheumatology

Abstract

The advent of social media has revolutionized and empowered communities of people living with rare diseases. Social media has enabled families of children with similar pediatric rheumatic diseases (PRDs) to meet regardless of geographic distance, allowing them to support each other and join together to advocate on behalf of their children. Researchers have also leveraged social media to learn about the health of patients and their communities. In this manuscript, we review the promises and perils of social media related to health, focusing on its potential use to support research and care of children with PRD.

1. Introduction

Social media are online platforms that allow users to interact with each other through text, images, or videos. Over the last ten years, their use has increased dramatically by persons of all ages. This popularization of social media has revolutionized and empowered communities of people living with rare diseases, giving voices to groups that would have otherwise lacked the opportunity to meet and exchange information and support.

Pediatric rheumatic diseases (PRDs) are rare diseases, which by definition affects fewer than 200,000 people in the United States. The development of social media has enabled families of children with similar PRDs to meet and support each other regardless of geographic distance. Clinicians and researchers have also leveraged social media to obtain health information from their patients and to engage with these rare disease communities for research. While social media has many valuable aspects, using it in healthcare and health research is complex and requires attention to issues of privacy, confidentiality, and safety.

In this article, we review the promises and perils of social media related to health, focusing on its potential use to support research and care of children with PRD. We rely heavily on data from the use of social media by children and families with non-pediatric rheumatic health conditions, as our field is only beginning to enter the social media arena.

2. Social media

Since the advent of social media in the early 2000s, the types and numbers of platforms that allow user interaction has increased exponentially. These social media platforms include those that target various audiences from professional (LinkedIn) to personal (Facebook), as well as blogging platforms where people share articles they have written (Medium) and micro-blogging platforms where those same messages are much shorter (Twitter). In addition to sharing text, social media platforms allow sharing of videos (YouTube), photos (Instagram), and even workouts (Strava). There are also sites where users curate and collect content found across the internet onto a single location (Pinterest). More recently, platforms have emerged that enable posting and sharing of ephemeral posts (Snapchat) and short-form videos (TikTok). Not surprisingly, social media platforms also target users with chronic medical conditions, including those that support exchange among specific sets of health conditions (TuDiabetes) or a wide array of health concerns (PatientsLikeMe).

The use of social media has grown steadily over time. The Pew Research Center estimates that 72% of US adults use some type of social media, but this varies by age, i.e., as high as 90% of those aged 18–29, and down to 40% of those aged 65 and older.¹ Social media usage patterns are dynamic, with continual development of new sites, platforms, and applications. Among large established platforms, YouTube is the most popular and used by 73% of all adult social media users, followed closely by Facebook, used by 69%. However, among 18–24-year-olds, Instagram and Snapchat are especially common, used by 75% and 73% of young adults, respectively. Young people, in particular, are “poly-platform” users--with multiple profiles and accounts.

Facebook is probably the most common social media platform used by parents of children with rare diseases. In a recent study of the 4,246 rare disorders that present in childhood, researchers found 6,398 active support groups, representing 826 of the most well-known and prevalent rare diseases ². The authors found that the number of disease groups has increased continuously over time, and many were available in multiple languages. The majority (69%) of support groups were private, which allows access to the group only after approval by a group administrator. The overwhelming popularity of private over public groups, likely reflect parents’ desire for a private environment in which to discuss aspects of their child’s health.

3. Promises of social media

Use by families of children with health concerns

Before the advent of social media, families obtained information about their child’s disease primarily from their healthcare providers.³ As information became more accessible on the web, families gained direct access to medical organizations, journals, and health news websites. This stage is referred to as Web 1.0, where the information flowed unidirectionally from established entities to consumers. The advent of Web 2.0, when social media was born, allowed users to interact with the online material and with each other, and to develop and share their own content and perspectives.

While a clinician can provide expert guidance about a disease during the clinical visit, they may not have the time--or know-how--to provide the support and affirmation that many patients and families require. Families of children with healthcare problems may turn to each other and to online communities to address unmet needs for the kind of information, support, and guidance that can be derived from a shared first-hand experience. As such, online platforms have become important alternative and complementary layers of the health information and psychosocial support ecosystem. Turning to online communities, Facebook groups, and other social media platforms is especially common among parents of children with rare conditions, who may struggle to identify the nature of their child’s health problem and find adequate support and guidance.^4,5 Families with children with unusual symptoms or undiagnosed diseases also utilize online communities for help in finding a potential diagnosis, as well as emotional support during the stressful diagnostic odyssey.^5,6 Once a diagnosis is made, online patient support groups can provide psychosocial support and help prepare families for the future, especially regarding schooling, health insurance, and medications. Families may find that engaging with others facing similar health conditions can help them navigate the complexity of services and systems that may be useful and necessary to manage their child’s health condition.

Social media engagement can provide families with informational and psychosocial support and empower them with insights that they can then carry into and enrich their interactions with their healthcare providers. Many online groups have professional advisory boards or groups of experts working to curate accurate content.⁷ The psychosocial support they provide families of children with chronic health conditions are also invaluable. One study of mothers of children with chronic illnesses noted that online communication was “essential” in helping to manage the mothers’ emotions regarding their child’s diagnosis.⁴ Online support can decrease feelings of parental isolation, improve disease-related knowledge, and enhance parents’ understanding of issues not often discussed in the clinic.⁸

The knowledge and empowerment families receive from social media can enable them to make better medical decisions. Parents often verify and clarify with their healthcare providers what they learn about from their online networks, and these actions can improve the parent/provider relationship.⁸ Studies have shown that patients and families often make treatment decisions and change their behavior based on what they learn from these online groups.^8–10

In a recent study of parents of children with PRD contacted online through patient support organizations, almost all (98.7%) reported using Facebook to read about other families with children with similar conditions.¹¹ These online interactions decreased the parent’s feelings of isolation and normalized the diagnosis of a PRD in their child. In addition, parents reported that these online interactions translated into changes in their management of their child’s symptoms, medication side effects, and the psychosocial impact of these diseases on their children. Notably, almost half the parents surveyed reported that online discussions affected decision-making about which medication(s) to use to treat their child’s illness, demonstrating that online discussions have real-world impact on clinical care.

Social media enables like-minded patient and family communities to collaborate and become strong advocates to improve the care and awareness of rare diseases, increase research funding, and influence health policy decisions. These online communities have helped to obtain orphan drug designation for the treatment of rare diseases, encouraged healthcare insurers to provide coverage to pay for drugs, and ensured in many instances that patients can receive the drugs regardless of the families’ ability to pay.⁷

Use by Adolescents and Young Adults

While many children with PRDs may be too young to participate in social media (social media platforms generally require users to be ages 13 and above), adolescents and young adults (AYAs) with PRD have the potential to benefit significantly from online interactions. As of 2018, 95% of adolescents (ages 13–18) had access to a smartphone (and thereby to social media). Almost half (45%) stated they were online “almost constantly,” and another 44% accessed the internet “several times a day.”¹²

In a study of otherwise healthy AYAs attending a primary care clinic, 98% reported using at least one social media platform within the prior month. Half endorsed posting information about their health on these platforms, most commonly regarding mood, wellness, and acute medical conditions.¹³ Reasons for sharing health-related information included the desire to connect with others with similar conditions and seek advice and support. Notably, only a quarter of participants thought social media was a valuable source of health information, and most did not want to connect with their healthcare teams through social media. They preferred, instead, to communicate with their healthcare team through text messaging.

AYAs with chronic health conditions, on the other hand, may have more reasons to participate in online health communities than otherwise healthy groups. Through online platforms, patients may help each other obtain self-management skills, ultimately improving outcomes and reducing costs.¹⁴ Studies of AYAs with type 1 diabetes showed improved disease management and glycemic control in those who participated in online communities that fostered peer-to-peer exchange and offered psychosocial support.¹⁵ A meta-analysis of social media interventions showed that most were successful in improving health outcomes.¹⁶

In pediatric rheumatology, Scalzi and colleagues (2018) tested the benefits of engaging in a disease-centered social media forum versus using a private journal to improve self-management skills among AYAs with systemic lupus erythematosus.¹⁷ The study provided all participants with a web-based educational program about lupus. Those randomized to the social media forum showed improvement in medication adherence, measures of self-efficacy, a sense of agency, community and empowerment, compared to those randomized to the private journal. The success of the social media support group cohort suggests that future interventions that create or engage online communities may be particularly valuable in improving the care of AYAs with PRD.

Use by clinicians and researchers

Clinicians and researchers can also leverage social media to improve patient and population health. For example, in addition to the physical exam and laboratory data obtained from patients during clinical encounters, clinicians may one day utilize a person’s “digital phenotype,” that is, their interactions with social media, to obtain a more comprehensive view of their experience of illness.¹⁸ While this concept is in its nascent stages, the hope is that data from social media and fitness trackers may be used to monitor patients’ health between visits and potentially detect disease flares at an earlier stage.

As an example, the frequency of use and sentiment expressed in social media may predict disease flares. In one study of AYAs with various inflammatory conditions, patients reported that time spent on Facebook during a disease flare or hospitalization more than doubled to 11 hours per day compared to 5 hours per day during periods of low disease activity.¹⁹ Thus, frequent use of social media may be a proxy for disease activity in these AYAs and could be used to initiate earlier interventions.

Social media can also be used to better understand patient beliefs regarding treatments, and to evaluate real-world data regarding drug efficacy and side effects. One group sought to study patient perceptions of disease-modifying antirheumatic drugs (DMARDs) on social media. They analyzed millions of social media posts and found 54,742 that referred to DMARDs.²⁰ The authors showed that biologic and targeted synthetic DMARDs had an overall positive sentiment from the public, primarily due to their efficacy. In contrast, methotrexate and sulfasalazine had slightly negative sentiments due to side effects. These types of studies are helpful to highlight the concerns of the patient community, allowing healthcare providers to better inform patients about common drug side effects and provide preemptive education regarding the online perspectives patients may find about the drug.

Researchers have also successfully leveraged social media to enroll participants in research studies. This is especially helpful for research on rare diseases, in which large numbers of participants may be difficult to reach in the clinic setting. Successful recruitment of patients with rare diseases online have included studies in congenital heart disease²¹ and hemophilia.²² A recent study of parents of children with PRD contacted through social media and patient support organizations found that Facebook was the most-used platform for recruiting patients.¹¹ This enrollment method was particularly beneficial for enrolling children with especially rare PRDs compared to those with more common conditions such as JIA.

More recently, the COVID-19 Global Rheumatology Alliance launched a patient experience survey to parents of children with PRD to understand better the pandemic’s impact on the child’s health.²³ By leveraging social media platforms and patient support organizations, more than 400 parents of children with PRD from around the world participated in the study and completed an online survey regarding their experiences during the pandemic. This study again highlights the feasibility and cost-effectiveness of leveraging online groups to conduct large-scale research studies.

Social media has also been used to broadcast public health messages. The benefits of utilizing this medium are its low cost and extensive reach. Messages can easily reach even vulnerable populations such as youth, and racial and ethnic minorities, who are commonly present online. Public health messages through social media platforms can leverage social support, memes, and influencers (popular users on social media) which can improve a health campaign’s reach and public engagement.²⁴ Research has shown the efficacy of these platforms to enhance knowledge regarding health topics such as skin cancer.²⁵ Also, positive behavior change has also been shown to take place through social media programs.²⁶

Social media platforms have also been leveraged for public health surveillance.²⁷ For instance, Twitter has been used to identify restaurants that may have been responsible for foodborne infections,²⁸ track Chikungunya outbreaks throughout Europe,²⁹ and to describe the spread of SARS-CoV-2 around the world.³⁰ Researchers recently utilized digital data streams from Twitter as early indicators of COVID-19 activity, and they were able to anticipate confirmed cases and deaths by 2 to 3 weeks.³¹

4. Perils of social media

Privacy

While there are many valuable aspects of health-related social media use by patients, families, clinicians and researchers, ensuring privacy and safety is challenging for patients, families, and clinicians. Protecting pediatric populations is essential; however, privacy protections safeguarding youth are often missing or lax. Persons of color and members of other marginalized groups may also be at particular risk, as disclosure of identifying information and health problems can be stigmatizing or result in discrimination. Risks from breach of privacy or disclosure of health information may be especially acute in the United States, where eligibility for obtaining insurance, healthcare, employment, and housing could be jeopardized by such disclosures.

Privacy of personal health information may be of concern to adolescents and young adults, as most AYAs do not want to share their online lives with their healthcare teams.^13,19 Projects attempting to use a patient’s “digital phenotype” to improve their health will have to overcome such barriers.

Safety and accuracy

Social media has also contributed to the diffusion of health-related misinformation (false information shared without the intent of causing harm) and disinformation (false information knowingly created to cause doubt, confusion, or harm). Disinformation is promoted to create fear, anxiety, and mistrust in institutions.³² Campaigns of misinformation are particularly harmful to people that are scared and doubtful, who are more susceptible to believing them. Not surprisingly, misinformation may often be more popular online than health information that is accurate.

Inaccurate health information may drive the uptake of unproven therapies, as occurred with hydroxychloroquine during the early phase of the COVID-19 pandemic,³³ and may encourage patients to avoid effective treatments. For instance, the online misinformation regarding vaccines may have led to decreased vaccination rates among developed countries.³⁴ More recently, studies have shown that reading misinformation about the COVID-19 vaccine lowers a person’s likelihood to receive a vaccine, which has severe implications for public health, especially in achieving herd immunity and putting a stop to the pandemic.

The accuracy of self-reported health data found on social media also has its limitations. While patients and their families are best for reporting PROs and quality of life measures, they may struggle to recall more specific aspects regarding procedures or treatments.²¹ Researchers may not be able to verify the patients’ self-reported medical conditions. Nevertheless, studies have shown that self-reported data obtained from these platforms generally align with a patient’s medical records³⁵ and the data gathered from patients usually match those obtained under clinical settings. ¹³

Also, those with poorer health or more severe illness may be more likely to post on social media sites related to health, more likely to consume health content online, ¹³ or post more frequently when they are ill, thus biasing health information found on social media sites.¹⁹ Thus, it is possible that negative impressions about health may spread to others online, as emotional states can be transferred on Facebook,³⁶ and negative health behaviors such as smoking and obesity spread in social networks.^37,38

Psychological impacts for caregivers and clinicians

Informational needs may differ between caregivers. For example, while some people become empowered with increasing information, others may experience unpleasant feelings, sorrow, or added anxiety, especially when presented with information about disease-related complications or death of other children with similar conditions.⁴ Similar effects were found in a study exploring returning research results to study participants from the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry.³⁹ Authors found that this information could be affirming for some participants and allowed them to feel that their experiences in managing their child’s disease were validated. However, reading the results presented an informational burden for other participants, raising more questions than answers and requiring more knowledge than they had to understand it.

Clinicians often view their patient’s excursions into social media in a negative light. Reasons vary, and may include feeling that their expertise is being questioned, concern about misinformation patients may find online, or that they do not have enough time to discuss and evaluate this information with their patients in clinic.⁸

Health disparities

Social media support groups may potentially exacerbate existing health disparities experienced by racial, ethnic and other minorities, because those that join patient support groups tend to be middle- and upper-income, educated, married, suburban whites.⁴⁰ Whether these disparities exist in online patient support communities is unknown. Compared to whites, older adults from racial and ethnic minorities are less likely to use technology such as social media related to their health,⁴¹ which may inadvertently put them at a disadvantage in receiving informational and emotional support. Fortunately, the use of social media for younger people of racial and ethnic minorities appears to be equivalent to those of whites; they may actually even be more likely to engage in online activism.⁴²

5. Opportunities

Teaching critical thinking skills and health literacy to patients and families can provide them with tools to better assess the accuracy of health messages found online. Highlighting the potential negative bias of online health information may allow patients and families to put the information they read into perspective. It is also be essential to tailor the amount and type of health information that patients or families may want to see online.

Simple techniques can prevent the inadvertent sharing of misinformation. Studies show that in general, people want to avoid spreading misinformation and can tell truth from fiction. However, when deciding to share content, they may focus on social validation and reinforcement, rather than the story’s accuracy.⁴³ A simple “nudge” prompting people to consider the accuracy of the content before they share it decreased the rate of disseminating false information. At the same time, social media companies have also begun to more aggressively flag or remove health misinformation and provide links to reliable health content.^44,45

Physicians should be educated on the value of online interactions for patients and families and to combat physician mistrust of online health information. Rather than asking patients and families not to look for health information online, clinicians should refer them to reliable sources of information and effective support groups instead (Table 1). Guiding patients to finding accurate health information online is a new responsibility for physicians in this digital age.⁴⁶ Taking it a step further, clinicians may also become involved in curating or creating accurate health content and refuting inaccurate information encountered online.

Table 1.

Examples of reliable online resources for children with pediatric rheumatic diseases and their families.

General rheumatology websites and support organizations

• American College of Rheumatology: rheumatology.org

• Arthritis Foundation: arthritis.org

• Childhood Arthritis and Rheumatology Research Alliance (CARRA): carragroup.org

• Facebook: facebook.com (multiple public and private support groups available)

• National Association of Rare Disorders: rarediseases.org

• RareConnect: rareconnect.org

Disease-specific websites and support organizations

• Autoinflammatory Alliance: autoinflammatory.org

• CRMO Foundation: crmofoundation.org

• CureJM: curejm.org

• Lupus Foundation of America: lupus.org

• Scleroderma Foundation: scleroderma.org

• Sjogren’s foundation: sjogrens.org

• Spondylitis Association of America: spondylitis.org

• Systemic Autoinflammatory Disease (SAID) Support: saidsupport.org

• Systemic JIA Foundation systemicjia.org

• Vasculitis foundation: vasculitisfoundation.org

6. Conclusions

Despite all the issues and polarization that social media has created, these platforms are here to stay. Clinicians must now become more familiar with social media platforms so they can guide their patients and families to find accurate health content and receive the emotional support they desire. Social media can be a blessing for families of children with rare diseases, as parents and patients are using these platforms to collaborate, advocate, and support each other. AYAs with chronic health conditions are also meeting each other online, sharing their lives, and learning from each other, often with objective improvements in their disease management. Instead of supplementing medical care, clinicians should view these outlets as complementary to the care they provide in the clinic. Social media provides emotional support and informational resources that clinicians may not be able to provide during the clinic visit. For researchers, social media has successfully tracked epidemics, enrolled large numbers of patients with rare diseases into research studies, and provided new insights into patient perceptions about diseases and medications. The use of health-related social media research will only continue to expand in the future, but issues of privacy and confidentiality regarding online health information need to be solved. Incorporating social media data into clinical care will also require overcoming multiple challenges: making sense of the data, being able to integrate it with information in the electronic health record, and ultimately utilizing it to improve patient outcomes.

Key points:

1. Social media has revolutionized and empowered communities of people living with rare diseases, including children with pediatric rheumatic diseases, and given a voice to groups that would have otherwise lacked the opportunity to meet and exchange information and support.

2. Online platforms have become important alternative and complementary layers of the health information and psychosocial support ecosystem for patients with chronic illnesses and caregivers.

3. Social media has been a research asset: it has successfully tracked epidemics, enrolled large numbers of patients with rare diseases into research studies, and provided insights into patient perceptions about diseases and their medications.

4. Multiple challenges exist: privacy and confidentiality issues, generating knowledge from large amounts of online data, integrating social media into the electronic health records, and harnessing it to improve patient outcomes.

Clinics Care Points.

• Children with pediatric rheumatic diseases and their families are engaging with each other through online networks.

• Rather than discourage these behaviors, clinicians should find ways to guide their patients and families to find accurate health content, and to receive the emotional support they desire.

• Clinicians should help develop critical thinking skills and health literacy in their patients and families to help them interpret online information

• Clinicians should consider taking part in online conversations by creating or curating accurate health content, and by partnering with patient support organizations