Using social media to engage adolescents and young adults with their health

Abstract

We focus on the potential of social media related to the health of adolescent and young adults, who are nearly ubiquitous social media users but difficult to engage with their health and relatively low healthcare utilizers. Opportunities to better engage adolescents and young adults through social media exist in healthcare delivery, health education and health policy. However, challenges remain for harnessing social media, including making a clear value proposition and developing evidence-based frameworks for measuring the impact of social media on health.

The setting: An adolescent clinic or college student health center waiting room. The scene: Waiting teens or young adults tapping away on their mobile devices, many likely using social media. The question: With adolescents and young adults increasingly on social media, how can we, as their providers, improve engagement with these young people through social media and what challenges for harnessing social media remain?

Social media is a popular means of interaction for adolescents and young adults, in which they create, share, and exchange information in virtual communities and networks. Social media allows participants to be the creators and consumers of content that is then discussed, modified and shared. The platforms for social media are diverse and evolving; these include social networking sites (Facebook), internet forums (eHealthforum.com), blogs and microblogs (Twitter), photograph or video sharing (Instagram, YouTube), crowdsourcing (Wikipedia, Kickstarter), podcasts (This American Life), and virtual game or social worlds (Second Life).

In this paper, we discuss methods to engage adolescents and young adults on topics related to their health since they are a difficult-to-reach population with relatively low healthcare utilization, while at the same time being ubiquitous users and often the earliest adopters of social media.^1,2 Their infrequent healthcare use compared to younger children or older adults occurs during a high-risk period for unintended pregnancy, sexually transmitted infections, substance abuse, unintentional injuries, violence, eating disorders and mental health disease.^3–5 On the other hand, national surveys show that around 90% of teens and young adults under 30 report using social media.^1,2 Additionally, the growing prevalence of smart phones and other hand-held devices are making social media sites accessible from anywhere; in 2013, one in four teens were “cell-mostly” internet users.¹ With nearly constant access to social media at home or in the palms of their hands, how can we, as healthcare providers, do a better job of engaging adolescents and young adults with their health and overall well-being through social media? We address this question by discussing the opportunities and challenges in healthcare delivery, health education and health policy as relevant to the adolescent and young adult population.

1. Healthcare delivery

1.1. Opportunities

Social media contains a wealth of patient-generated content, providing an opportunity to better understand the patient-perspective on their healthcare and their perception of quality.⁶ For example, regularly tracking comments or reviews that adolescents and young adults post on physician or healthcare rating sites, such as Yelp.com and Healthgrades.com, can identify patients' opinions on the strengths and areas for improvement in the care we provide, thereby serving as a proxy for what they value in healthcare.^7–9 While parents are using physician rating sites and anecdotal examples exist of young people providing healthcare feedback on social media, providers could encourage their teen and young adult patients to rate and describe their healthcare experiences on these platforms.¹⁰ Regularly monitoring this patient input can complement traditional measures of care quality and inform how to provide more adolescent and young adult patient-centered care.

Social media can also be used to supplement or streamline the care we provide to adolescents and young adults in the clinic. As an example, a substantial recommended component of adolescent and young adult routine visits is counseling on preventive anticipatory guidance.⁴ Rather than attempting to cover a comprehensive list of preventive topics (e.g., sexual health, drug and alcohol use, safety, school performance, mental health, healthy online and social media usage) during a visit, providers could direct patients to social media platforms where they could explore and input their own data and questions prior to the visit.¹¹ These platforms might emulate tools, such as the Rapid Assessment for Adolescent Preventive Services (RAAPS) that are administered to adolescents while awaiting their appointment.¹² Such a tool could be modified to also include a component of peer-to-peer learning or networking so that teens and young adults could share their experiences with issues of their choice, such as dealing with friends who smoke or coping with stress. The conversations that arise among communities of peers will be potentially more salient to young people and complement the provider-patient discussion on these topics. The format for this type of forum could exist publicly with the option for anonymous posting or privately and securely among a clinic's cohort of patients, for example. Additionally, screening for preventive health issues outside of the clinic visit can prioritize key visit topics and allow for more focused, cost-effective provider face-to-face time.^12,13

Beyond routine visits, adolescents' and young adults' frequent social media engagement can be harnessed to “follow” patients between office visits. There are opportunities through social media to increase compliance with healthy recommendations made during visits, such as increased exercise and healthy diet choices, with the motivation of online peer support and social gaming.^14,15 As an example for chronic disease management, a mobile app that included social networking as well as a care management calendar and chat and text reminders was found to be acceptable, useful and feasible for the management of cystic fibrosis in adolescents.¹⁶ The interest of adolescents and young adults in using social media to track their chronic diseases, however, may vary; a review of the use of social media for adolescents with asthma, for example, found insufficient evidence to support widespread incorporation of social media into asthma care.¹⁷

1.2. Challenges

With the transformation of the healthcare system and the evolution of social media, several challenges and unanswered questions remain about incorporating social media into our healthcare delivery models. For example, should the time providers spend engaging with patients or moderating discussions on social media be reimbursed? If so, this would strengthen the case that providers and healthcare systems should invest time and money in social media.¹⁸ While to our knowledge no reimbursement models currently exist for delivering healthcare through social media, there is a movement to align incentives for patient engagement and value-based outcomes.¹⁹ Initial exploratory studies are needed to test acceptability and feasibility of different reimbursement models. These might include traditional fee-for-service, which has been adopted by some insurance companies for email, online consultations and telemedicine, or the development of novel value-based reimbursement models.^20,21 Finally, to warrant payment for these services, a clear value proposition must be made, which requires more rigorous study of the potential benefits, costs and value of health-related social media to providers, patients and society.

A second challenge is the inability to incorporate social media generated content into traditional healthcare records. This is particularly challenging because of the various social media formats, from text updates on Facebook and Twitter to photo and video-sharing on Instagram.com or Vine.com that are increasingly popular among adolescents and young adults. Best practices is this space have not yet been established but warrant further exploration.²² There may be opportunities to develop integration strategies concurrently for social media, telemedicine and mobile health data as these are all emerging structures for digital patient engagement.²¹ Developing innovative methods to incorporate patient-generated data from social media and other platforms in clinical documentation may be timely with the inclusion of patient engagement in the federal government's meaningful use goals.²³

Challenges also arise regarding privacy, confidentiality and professionalism when interacting with patients online. These issues are perhaps even more important with adolescents and young adults who may be less aware of the risks of sharing personal information online and at risk of victimization by social media trolls or cyber bullies.^24–27 Questions, such as, “Should physicians accept ‘friend’ requests from patients or their parents?” and “Can providers maintain separate professional social media identities for patient interaction?” have been addressed by others.^28–30 While these questions continue to be debated, some recommendations for directly communicating with patients using social media have been proposed. These include using HIPAA-compliant or secure closed social networking systems (e.g., Healthtap.com) and establishing expectations about privacy protections, message response time and appropriate use of online versus in-person healthcare.³⁰ While secure social networking forums are appropriate for some patient-provider interactions, Table 1 lists several examples of publicly available social media sites providing important health services. Additionally, more widespread guidance from medical professional organizations and healthcare institutions regarding social media engagement is needed.^30,31

Table 1.

Opportunities and challenges for adolescent and young adult health engagement through social media.

Opportunities Healthcare delivery	Existing or proposed examples	Challenges
Provide more patient-centered care through systematic monitoring of social media sites that contain patient-generated content on healthcare quality.	Track reviews of providers or hospitals on sites, such as Yelp.com or HealthGrades.com, to identify areas for improved patient-centered care.7–9 Direct patients to social media platforms with information on preventive anticipatory guidance topics. Harness social gaming platforms to improve compliance with lifestyle recommendations.15 Mobile tracking and advice application with social networking for adolescents with cystic fibrosis.16	Provider reimbursement for healthcare delivery through social media. Integration of social media generated content into traditional healthcare records. Issues of privacy, confidentiality and professionalism for adolescent and young adult patients as well as providers.
Complement or streamline care provided at routine visits
Follow patients between office visits
Health Education
Peer-to-peer healthcare for adolescents and young adults with common diseases or interests.	PatientsLikeMe.com – Health data sharing platform that promotes transparency and fosters openness among patients. Crohnology.com – Patient-centered information sharing network for people with chronic medical conditions. CureTogether.com – Crowdsourcing website where patients share information on sensitive symptoms and compare treatment efficacy. StartUpHealth.com – Working to accelerate health innovation in underserved communities. Hospitals posting health education messages on their Facebook.com or Twitter.com accounts. Teenology101 – Directs patients to blogs on particular health topics. Has column on parenting transgender teens that has thousands of page views from parents.	Inaccurate or misinterpreted information on social media sites. Provider reimbursement for education on social media. Transient popularity of social media sites affects sustainability of educational efforts.
Explore stigmatized topics (e.g. sexual health, mental health) anonymously online.
Enhance engagement among difficult to reach adolescent and young adult populations.
Enhance the reach of online health education messaging.
Health Policy
Increase young adult engagement and health insurance enrollment under the Affordable Care Act.	YoungInvincibles.org – Hosted an online crowd-sourced video contest on reasons young adults should enroll in health insurance.53	Defining the value of health policy social media outreach efforts with adolescents and young adults.

2. Health education

2.1. Opportunities

There is growing evidence that peer-to-peer healthcare is an important source of information and support for patients.³⁰ The empowerment and information exchange among patients and families with shared conditions already occurs in online support groups and forums (e.g., PatientsLikeMe.com, Crohnology.com, SmartPatients.com).^32,33 In a study of PatientsLikeMe.com, patients not only used the social network to learn about their symptoms and treatment options but also reported health benefits, such as decreased risky sexual behavior among patients with HIV and less inpatient care for patients with mood disorders.³² MeetUp.com and TwitterChats are other venues that provide relevant health information to targeted groups of patients in virtual online events. These social media platforms have created new opportunities for a more engaged and user-centric experience, allowing patients to choose how they share and receive health information.³⁴

Previous work suggests that teens are interested in receiving health information via social media, particularly for sensitive topics like sexual health.^35–37 For this and other stigmatized topics that disproportionately affect adolescents and young adults, such as mental illness, young people may benefit from the anonymity of exploring these topics online through social media. CureTogether.com, for example, is a crowdsourcing website where patients share information on sensitive symptoms and compare treatment efficacy.

Additionally, platforms that target and gain traction among difficult to reach and vulnerable adolescent and young adult populations have the potential to reduce health disparities.¹³ A study of Latino high school adolescents, for example, found nearly universal use of social media with youth perceiving that social media was an essential method of communication for public health programs.³⁸ In other examples, StartUpHealth.com, an active community of over 8,000 health and wellness innovators, received a grant in 2013 to bring entrepreneur-driven ideas to patients and providers in underserved communities, while several efforts are targeting connected health opportunities for vulnerable Medicaid populations.^39,40

Healthcare organizations and individual providers have also recognized the potential of social media as a platform for adolescent and young adult health education given its capacity to widely disseminate tailored messages.¹³ Both children's and adult hospitals use social media for public health messaging, with the majority hosting Facebook.com and Twitter.com accounts. On these platforms, they cover important adolescent and young adult health topics, including safety tips and vaccinations. Individual adolescent and young adult providers are also establishing social media identities to amplify the reach of their educational efforts. These include a rise of widely read physician bloggers (e.g., KevinMD.com) and youth-focused venues (e.g., Teenology101).⁴¹ Engaging community partners or organizations popular among adolescents and young adults can further expand social media messaging reach. This phenomenon was exemplified by a peak in Twitter traffic on concussion following the release of an NFL concussion awareness campaign poster.⁴²

2.2. Challenges

While access to health information via social media may make patients better informed and lead to improved health outcomes, online information may be inaccurate, misleading or misinterpreted, resulting in unwanted health behaviors or altering the patient-doctor relationship.^43–45 While lists of reputable or recommended websites or mobile health applications have been proposed, an analogous system for validating social media sites would be challenging given that user-generated content is constantly being added and modified with authors often unidentifiable.^46–48 Potential solutions include more provider participation to moderate online forums for misinformation, though the question of physician reimbursement for this effort again applies.^13,49 Alternatively, patients could be encouraged to vet information they find on social media with a trusted healthcare professional.

Another challenge in developing social media health education is the transient popularity of social media sites, especially among adolescents and young adults.¹ Platforms need to be selected for the appropriate target audience and format of information being disseminated. To stay current with changes to the social media landscape, programs and organizations can invest in dedicated social media teams to identify the highest impact platforms. Smaller groups or individual providers can rely on publicly-available social media trends data from sites, such as Pew Research Center's Internet and American Life Project.⁵⁰

3. Health policy

3.1. Opportunities

Lastly, social media is playing a role in increasing young adult engagement with health reform under the Patient Protection and Affordable Care Act (ACA). Though the ACA offers several provisions for increasing health insurance coverage for young adults (e.g., extended parental dependent coverage, health insurance marketplaces and Medicaid expansions), some young adults remain uninsured.^51,52 The successful enrollment of more young adults in part depends on outreach efforts, including via social media. HealthCare.gov, for example, hosts Facebook.com, Twitter.com and YouTube.com platforms, which received substantial traffic during the first open enrollment period. On these sites, HealthCare.gov promoted its health insurance plans to eligible consumers, provided pertinent information on the enrollment process, and responded to individual consumer questions on content and technical issues. Young Invincibles (YoungInvincibles.org), a national young adult advocacy organization, more directly focused their outreach and social media efforts on the millennial youth. They partnered with the Department of Health and Human Services to host an online crowd-sourced video contest on why young adults should enroll in health insurance; the contest garnered over 100 submitted videos and more than half a million votes and video views.⁵³

3.2. Challenges

Similar to healthcare delivery and education, determining the value of social media outreach around health policy with the adolescent and young adult population is needed. For example, what impact did the young adult-focused marketing on Health-Care.gov's social media platforms have? Exploring the perspective of the targeted young adults would allow for potentially more effective outreach and enrollment efforts via social media.

4. Conclusions

It's no longer enough to know that social media exists. Social media has infiltrated the lives of our adolescent and young adult patients, and we need to expand our capacity to meet them “on their turf.” However, to make a value proposition or develop evidence-based frameworks to better engage young people with their health through social media, further research is needed. For existing health-related social media sites, a first step would be to identify those that resonate with adolescents and young adults and then more systematically define and measure their impact on health, including patient-centered outcomes. A proposed framework for studying social media use in chronic disease management included identifying social media affordances for patients, surveying patients on their perceptions of social media use in healthcare, piloting an online intervention to better target individual needs, and then using patient-reported outcomes as empirical evidence of health outcomes.³³

In this evolving landscape, however, traditional research methods for testing and validating interventions may not be appropriate or sufficient. Instead, increased rapid cycle testing with parallel research and development of prototypes could help keep pace with social media advances. Streamlining this process should include increased and early collaboration with adolescents and young adults to provide the patient-perspective, health experts to inform content, technological experts to develop software, and research teams to measure effectiveness with data collection tools built into social media platforms. With further work and collaboration in this area, perhaps we will soon practice in a setting where those waiting teens and young adults are using evidence-based, secure and seamlessly integrated social media sites to prepare for their upcoming doctor's visit – and then telling their friends to use it too.