This article was made possible by an educational grant from
Chamberlain College of Nursing
Paul, L. (February 2012). Improving Health in Adolescents with the Use of Information Technologies. Online Journal of Nursing Informatics (OJNI), 16 (1), Available at http://ojni.org/issues/?p=1199
Adolescents are large consumers of communication technologies. The majority of teens today go online to find information, talk to friends via a social media site and play Internet games – many times on their mobile phones. Yet the use of information technologies to reach adolescents for healthcare education and interventions is underutilized. This article aims to demonstrate the potential of using current communication technologies as intervention platforms to improve health in adolescents and makes an argument for more research to determine the effectiveness of consumer health informatics for youth.
Information Technologies; Communication Technologies; Consumer Health Informatics; Internet Based Applications; Patient-centered Applications
One of the greatest challenges in healthcare is the ability to capture the attention of adolescents and young adults to educate them on health, wellness, disease management and prevention. Youth, especially young adults, are busy exploring their independence. Part of this investigation involves risky behaviors that may compromise their health and safety; there can be a tendency amongst youth to feel and act indestructible. Without direction and guidance, some youth can fall into a deep abyss of unhealthy behaviors, and youth with pre-existing conditions are of special concern. Particularly challenging to healthcare professionals is the development of interventions that impact youth in ways that get them to stop and think about the consequences of their behaviors. How can we attract the attention of youth and then how can we intervene to prevent disease and manage illness – motivate and empower them – to be healthy and safe?
Health informatics (or consumer health informatics) is one mode of health communication technologies that is exploding with possibilities for healthcare professionals and youth. Advances in information technologies have brought us the Internet, mobile phones, voice calls over the Internet (e.g. Skype), social networks (now referred to as social media) and Twitter. Youth are one of the primary users of these communication technologies. It is this arena of communication though that may be underutilized by health professionals for reaching out to youth.
Exchanging and receiving information about one’s health with a healthcare provider tends to be a very interpersonal and in-person form of communication – so we think. Today, the exchange of health information is not necessarily done in person. In fact, the amount of information about health, wellness, disease prevention, providers and hospitals that is not shared face-to-face is astounding. Google a disorder, practitioner or hospital, and something generally comes up: commentary from a person with the disorder, someone expressing some expertise in the subject, or ratings about the performance of a practitioner or hospital. A Pew (2009) Internet study has found that 61% of adults in America look online for health information. These are referred to as e-patients. A large portion of e-patients access user-generated health information (i.e., they read someone else’s comments about health). To a lesser degree, they consult rankings or reviews of practitioners/hospitals and receive updates about health or medical issues (Pew, 2009). Consumer health informatics is a burgeoning field which involves health information sharing strategies. It has been defined by Ferguson (2002) as “the study, development, and implementation of computer and telecommunications applications and interfaces designed to be used by health consumers” (para. 5). This encompasses a variety of technologies from Web messaging, Web searches, social media and text-messaging. Consumer health informatics involves the consumers’ active participation in decision making about their own health and the health of their family members (Lewis, Chang, & Friedman, 2010). Ferguson (2002) has identified 10 levels in which consumers participate in the access and use of health care information:
Level 1. e-patients search for health information
Level 2. e-patients exchange e-mail with family members and friends
Level 3. e-patients seek guidance from online patient-helpers
Level 4. e-patients participate in online support groups
Level 5. e-patients join with other online self-helpers to research
their shared concerns.
Level 6. e-patients use online medical guidance systems
Level 7. e-patients interact with volunteer online health professionals
Level 8. e-patients use the paid services of online medical advisors
Level 9. e-patients engage in electronic conversations with local clinicians
Level 10. e-patients receive one-way electronic messages from their clinicians
Ferguson developed this schema as a guide for understanding the emerging world of the e-patient and as guidance for attempting to envision the next healthcare system (2002).
When adults go online for health reasons they are often looking for tailored information, searching for a “just-in-time-someone-like-me” health consumer (Pew, 2009, p. 3):
- 41% of e-patients have read someone else’s commentary or experience about health or medical issues on an online news group, website, or blog.
- 24% of e-patients have consulted reviews online of providers.
- 24% of e-patients have consulted reviews online of hospitals/facilities
- 19% of e-patients have signed up to receive updates about health or medical issues.
- 13% of e-patients have listened to a podcast about health/medical issues
- 4-6 % are actively writing or creating new health content.
Adults actively seek health information on the Web to make decisions about their health. Unfortunately, we know more about usage patterns in adults than in youth and adolescents. What is known about youth though is that they are one of the primary users of today’s communication technologies – mobile phones, Internet and social media (Pew, 2007; Pew, 2010).
The World Wide Web’s first commercial availability was the year 1994. The year 1994 was also, approximately, the beginning of our most recent cultural generation – Generation Z, or otherwise referred to as the Net Generation or the Internet Generation. To what extent has the onset of Internet communications influenced today’s youth? The Pew Internet Project, one of the most authoritative providers of data on the Internet’s impact on the lives of Americans, has been researching the use of the Internet as well as other technologies such as mobile phones, since 2006. Technology, they have shown, is extremely integrated into the lives of youth today. The first important set of findings collected in a 2007 Pew study found that 93% of teens ages 12-17 go online and 73% of those teens use social networking websites. The creating of all kinds of digital material has been central to online teens. The Pew study found that 39% of online teens share their own artistic creations online, such as artwork, photos, stories, or videos and 33% create or work on webpages or blogs for others, while 27% maintain their own personal webpage (Pew, 2007).
Teen Internet activity does not just have to do with social network and content creation though. The most popular online activity by teens is information gathering (Pew, 2007). Of the online teens, 81% go to websites to find out information about movies, TV shows, music groups or sport stars, 77% get information about news and current events, and 28% of online teens look for health, dieting or physical fitness information on the Internet (Pew, 2007).
In a recent study of teens and mobile phone use, Pew (2010) found that 75% of all teenagers (58% of 12 year olds) now have a mobile phone. Nearly 90% of teens that own phones send and receive texts, most of them daily. Half send 50 or more text messages a day, or 1,500 texts a month, and one in three send more than 100 texts a day, or more than 3,000 texts a month. Older teen girls send the most text messages—100 messages a day—while the youngest teen boys are the most resistant to texting, averaging 20 messages per day. Text messaging has become the primary way that teens reach their friends, surpassing face-to-face contact, email, instant messaging and voice calling (Pew, 2010).
Mobile phones do more than just text. More than 80% of phone-owning teens also use them to take pictures (64% sharing those pictures with others). Music is listened to by 60% of teens via their phone, 46% play games on their phone, 32% swap videos and 23% access social networking sites. The mobile phone is the “favored communication hub for the majority of teens” (Pew, 2010, p. 2).
Multi-channel teens are active in all the communication realms – Internet access, text messages, instant-messages and social network sites. “These are highly wired and connected teens that are notable for the intensity with which they use connective technologies, layering new technologies over old, while sustaining an overall higher likelihood of daily use of all technologies” (Pew, 2007, p. 19).
Advances in information technologies have introduced innovative new approaches to communicating and delivering healthcare which are redesigning the healthcare process (Demiris et al., 2008). With the use of these new technologies patients can play a more active role in their healthcare delivery. Such technologies are referred to as “patient-centered applications” and are defined as systems that enable a partnership among practitioners, patients, and their families (Demiris et al., 2008).
One of the primary applications for the dispersal of health information is the Internet. The Web allows patients to communicate by e-mail with their healthcare providers, other patients, family and friends. It also allows them to seek health education and information as well as to seek ratings about providers and medical facilities by web browsing.
There are several ways to use the Internet to provide and/or access health information. File repositories such as Word files and Adobe’s Portable Document Format (pdf), are a common means of distributing information. Document repositories allow file downloads – test results, education and information—that can be sent via e-mail and /or embedded in webpages to be downloaded by the patient.
Social media is a term that refers to the use of Web-based interactive communications – via computer or mobile phone – that build on the technology of Web 2.0 and that allow the creation and exchange of user-generated content (Kaplan & Haenlein, 2010). Social media comes in several different Internet forms including forums that use weblogs (blogs) and microblogs (instant messaging, text messaging, digital audio), wikis (websites created and edited by their participants), podcasts (digital media files), photographs and videos. Sixty percent of e-patients, or 37% of adults in the United States, use social media activities related to health and healthcare (Pew, 2009).
Internet voice communication is a real-time method of talking to someone over the network. Voice communication technologies are accessed by downloadable software from the Internet, a microphone and webcam. People can converse on the network while they see each other from remote locations. Some of the more common Internet voice communication software is Skype, Google Calls, and Yahoo! Voice.
Fifty-three percent of American adults age 18 and older play video games (Pew, 2008). This may seem to be a significant amount until adults are compared to youth. Ninety-seven percent of teens play video games (Pew, 2008) However, not all games are solely for fun. A “serious game” is a game designed for the purpose of solving a problem. The game is meant to educate and train. There are a wide variety of serious games offered on the Internet for the purpose of increasing physical activity, improving patient compliance, and encouraging better personal health. There are many serious games developed for youth to educate and train them on specific health concerns such as diabetes, obesity and cancer.
Like the information sharing that occurs with the use of a computer, mobile phone technology has developed the smartphone that combines the functions of a personal digital assistant (PDA), mobile phone, WiFi, digital camera, videocamera and microphone. A new study by the Pew Research Center’s Pew Internet Project reports that 35% of American adults now own smartphones. Nine percent of those adults have downloaded a health and fitness application onto their phone (Pew, 2011). One-third of young mobile phone users have a smart phone with 55% of those users being female.
Many PDAs, iPods and pad tablets can connect to the Internet. The same information sharing that can occur with the use of a desktop computer, laptop or netbook can occur with these mobile devices. These are small and very portable, much like mobile phones. PDAs are quickly being replaced by the newer technologies such as the iPod and pad tablets.
Home telehealth applications are also known as telehomecare applications. They utilize either digital or analog signals to communicate between a transmitter and a receiver. Telecommunications enable healthcare providers at clinical sites to communicate with patients in their homes or vice-versa, patients to communicate with healthcare. These are referred to as virtual visits (Demiris et al., 2008). Perhaps one of the most recognized teleheath applications is Life Alert™, a 24-hour emergency response for the elderly and disabled. The patient wears a pendant that has a button on it. Pressing the button activates a base unit in the home that then alerts a central monitoring station initiating two-way voice communication between the patient and an operator. If there is no response, the operator contacts proper authorities. Telehealth has been used to monitor heart failure patients, stroke patients, diabetic patients and patients with chronic obstructive pulmonary disease (COPD).
Over the last several years a significant amount of research has emerged introducing a variety of communication technologies that screen for health-risk behaviors, educate patients about chronic illness, promote prevention of unhealthy behaviors and provide interventions in the adolescent population (Hassan & Fleegler, 2010). Several studies (discussed below) provide some insight into the use of communication technologies for the purpose of educating, supporting and motivating adolescent patients.
Many of the interventions conducted via the Internet for adolescents have had to do with behavioral health changes to improve health by teaching problem-solving skills, coping techniques, and self-management. Several promising studies have focused on youth with Type 1 diabetes. In several studies, spanning over a decade, Whittemore and Grey have studied the positive effects of coping skills training for youth with Type 1 diabetes. In recent studies, they have developed an Internet coping skills training program (TEENCOPE) for adolescents with Type 1 diabetes (Whittemore, Lindemann, Ambrosino, Jaser, & Grey, 2007). TEENCOPE consists of 5 weekly sessions on self-talk, communications skills, social problem skills, stress management and conflict. During pilot studies to evaluate its feasibility and acceptability, youth that participated in TEENCOPE demonstrated significantly higher usage, greater enjoyment and acceptability compared to youth that participated in an Internet intervention that comprised 4 weekly Internet sessions on glucose control, nutrition, exercise, sick day management and new diabetes technologies. Whittemore, Grey and their colleagues are currently conducting a multisite, randomized controlled trial with 300 youth to evaluate TEENCOPE on a larger scale. This study will conclude in May of 2012 (Whittemore, Grey, Lindemann, Ambrosino, & Jaser, 2010).
Mulvaney, Rothman, Wallston, Lybarger and Dietrich (2010) have developed an Internet based self-management intervention called YourWay for adolescents with Type 1 DM. A total of 72 adolescents with diabetes, ages 13-17, were randomized to a usual-care and Internet support group or to just usual-care. The intervention was designed to reduce problem-solving barriers to self-management. Results from their study showed that a brief Internet-based self-management intervention was rated highly by participants and was effective at improving problem solving and self-management of Type 1 diabetes by adolescents. The study suggests that Internet-based interventions are feasible and accessible for diabetes care in adolescents (Mulvaney et al., 2010).
In a literature review conducted by Hamel, Robbins and Wilbur (2010), computer and Web-based interventions were shown to improve physical activity in adolescents. In the review, the authors looked at 14 randomized-controlled trials. Most of the interventions demonstrated statistically significant increases in physical activity, although they found that the findings were small and short-lived. The authors conclude that computer or Web-based interventions are a feasible and acceptable way to increase adolescent physical activity but they recommend that an intensive intervention with more than minimal supervision of a website is needed to sustain use. They also recommend that an intervention must have some individual tailoring to enhance personal relevance (Hamel, Robbins & Wilbur, 2010).
Smoking cessation among adolescents has been a concern amongst health providers. In a literature review exploring Internet and cell phone based smoking cessation programs for adolescents, Mehta and Sharma (2010) reviewed smoking cessation interventions in adolescents in the age group of 11-19. There were 10 interventions; of the studies one utilized the cell phone the rest were conducted on the Internet. Mehta and Sharma found that the use of the Internet or cell phone for smoking cessation interventions were more effective in conjunction with discussion forums and online counseling than just interventions that were solely Internet based. In addition they found having an individualized component to the intervention that allowed the participant to progress at their own pace were the most successful.
Text messaging is a technology that has not been widely implemented as a platform for providing care. Sweet Talk, a text-messaging system to support young persons (8-18 years of age) with diabetes was found to improve diabetes self-management. In a study conducted by Franklin et al., 91 youth were randomized to three groups: conventional insulin therapy, conventional therapy and Sweet Talk or intensive insulin therapy and Sweet Talk. Goal-setting at clinic visits was reinforced by daily text-messages from the Sweet Talk software system, containing personalized goal-specific prompts and messages tailored to patients’ age, sex and insulin regimen. Although Sweet Talk alone did not improve glycemic control it was associated with improved self-efficacy and adherence (Franklin, Waller, Pagliari, & Greene, 2006).
Text messaging reminders have also been shown to improve adherence to medications in youth. One study evaluated a program called CareSpeak, which issued text messages to 41 pediatric liver transplant patients reminding them to take their immunosuppressant medication. The patient had one hour to text back to confirm they had taken it before parents would be alerted to intervene. After a year’s time there was considerably less fluctuation in medication blood levels and therefore a significant reduction in the number of patients that were considered high risk for rejection (Chen, 2009).
Similarly, a pilot study conducted with 20 adolescents and adults with topic dermatitis found significant benefits after receiving 6 weeks of daily text messages reminding them to use their medication. Patients reported the text reminder helped them to adhere. Disease severity improved in 70% of the participants (Pena-Robichaux, Kvedar & Watson, 2010).
It is recommended that patients with cystic fibrosis (CF) avoid face-to-face contact and that interventions for this patient population be delivered individually. This limits opportunities for peer support. To improve the delivery of care to patients with CF, Marciel et al., have developed a web-enabled cell phone, CFFONE, designed to provide CF information and social support to improve adherence in adolescents with CF. The efficacy and safety of CFFONE are currently being studied in a multi-center trial (Marciel, Saiman, Quittel, Dawkins, & Quittner, 2010).
Online gaming is a technology that has been utilized since the 1990’s. Online gaming today allows players from all over the world to play games with each other over the Internet. With graphic technologies such as Flash and Java, web-based games have become complex virtual worlds that allow hundreds of thousands of players to play the same game together. There are different styles of multiplayer games: role-playing, real-time strategy, first-person shooter and online social games. A serious game is a game designed for a primary purpose other than entertainment. Many companies have developed serious games for youth that were designed to be used with a video game player (Nintendo®, HopeLab, Game Equals Life, Archimage) or equipment like a glucometer (Bayer®, Guidance Interactive Healthcare). In the past several years, companies have started to develop serious health games for online use. Archimage’s Playnormous, is a health gaming website for youth 14 and under that teaches healthy eating and exercise. Shepphard Software, Learning Games for Kids and Kids Health from Nemours are a few of the many companies who have free online games that teach youth about their health.
There is a research and clinical potential for analyzing and utilizing games for health improvements in youth. Online video games can make therapeutic offerings more engaging. There has been little research into the opportunities afforded by the medium of online gaming though. Future research into online video game therapy is needed (Wilkinson, Ang & Goh, 2008).
Social media has been phenomenally embraced by youth as one of the most popular information sharing technologies available. Yet, in reviewing the use of information technologies as a platform for providing health interventions, it appears to be underutilized. There are limited studies describing health interventions for youth administered via a social media site. Social media sites have been used as forums to discuss a person’s health – but generally by adults only. Perhaps one of the largest of these sites is PatientsLikeMe. Over 115,000 patients of all ages, primarily 20 and over, with over 500 medical conditions are members of this social media website. There are sites for diabetes, exercise and nutrition, cancer, disabilities, etc. Aside from the researchers of the site (PatientsLikeMe) there is little research addressing this platform for health.
Research on social media and its effects on health knowledge and behaviors are lagging. A “NIH Think Tank” agrees, Morrato, et al (2011) have identified knowledge gaps in social media research and practice. Three major focus areas that the NIH Think Tank has identified are: (1) Use of social media within the framework of behavior change theory; (2) Measuring the impact of social media; and (3) Trends in the use of social media and their effect on dissemination and implementation. There are some common practice questions that the Think Tank wants considered when using social media for the dissemination of health information and the implementation of health interventions. Some of those questions include: 1) How do you disseminate health interventions with fidelity in social media? 2) How do you reach various audiences through different social media channels, e.g. adolescents, minority populations and elders? 3) How can we foster peoples’ involvement and engagement in dissemination and implementation research using social media? 4) How does the commercialization of the social media space affect trust and use of social media? 5) What are the privacy issues when considering using the data within social media for research? (Center for Public Health Practice, 2011). With 93% of all teens going online and 73% of those teens going online to use social networking websites, there is a tremendous potential for the use and research of social media in the health of adolescents.
Adolescents and young adults are tremendous consumers of communication technologies – the Internet, text messaging, gaming and social media being the most utilized of the technologies; therefore, it makes good sense to provide health information and interventions for teens by way of these tools. There are a few interventions using the Internet and text-messaging to improve health in adolescents. Those cited have been shown to be effective in changing behavior and improving outcomes in youth. But there is little if no evidence showing the possible benefits of serious games and social media on the health of youth. More studies are needed to determine the effectiveness of the Internet, text messaging, gaming and social media as a stage for health behavior change. Information technologies such as the Internet, social media and mobile phones with text messaging are central to the identity of youth today. Healthcare providers may be at a great disadvantage if they do not utilize information technologies to reach out to adolescents. If we want to make a difference in the health of our youth, we need to avail ourselves of these technologies and develop means within these tools to influence and affect the health behaviors of our youth. These are potentially significant avenues to gain the attention of adolescents to communicate health information and to be significant platforms for interventions. Ultimately, we need more studies that investigate the potential of communication technologies for health in adolescents.
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Linda Paul, MS, RN
Ms. Paul is a doctoral student at Arizona State University. She plans to use social media as a platform to deliver an intervention to adolescents with poorly controlled Type 1 diabetes. She is also currently an Associate Clinical Professor at Northern Arizona University in the School of Nursing
I would like to thank Dr. Bonnie Gance-Cleveland, my advisor and mentor, for her continuous advice and guidance as she helps me navigate through my doctoral studies. This paper is the result of an independent study taken with her.