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Innovative patient care practices using social media T. Joseph Mattingly II
Abstract
T. Joseph Mattingly II, PharmD, MBA, Assistant Professor, School of Pharmacy, University of Maryland, Baltimore, MD
Objective: To characterize the literature on social media applications used to deliver patient care.
Correspondence: T. Joseph Mattingly II, 20 North Pine Street, N415, Baltimore, MD 21201;
[email protected]
Data Sources: A search of the literature was conducted on June 11, 2014, using PubMed, MEDLINE, CINAHL, and Communication Abstracts databases for clinical studies between 2004 and 2014. A combination of the search terms “social media” or “Web 2.0” or “online social networking” or “Facebook” or “Twitter” AND “patient care” or “health care” was used. In addition, 42 additional abstracts were retrieved from www.patientslikeme. com for review.
Disclosure: The author declares no relevant conflicts of interest or financial relationships. Acknowledgments: To Jeff Cain, EdD, MS, for ongoing guidance and discussion. Received July 30, 2014. Accepted for publication November 21, 2014. Published online in advance of print April 10, 2015.
Study selection: Only published, peer-reviewed journal articles were considered and only publications in English were included. The abstracts from this search were reviewed for relevance to Web-based social media platforms being used in patient care activities. Data synthesis: A total of 35 articles were included in the review. A majority of the studies published on social media and patient care used cross-sectional designs and were conducted in the United States. Multiple social media applications were studied, but Facebook was the predominant social media tool found. Patient care opportunities for various diseases with social media have been studied. Recurring themes included overcoming barriers, engaging and empowering patients, enhancing research, providing information for health promotion, scratching the surface, and potential pitfalls. Conclusion: Social media have the potential to help patients and practitioners overcome multiple barriers in the delivery of health care. Maintaining patient privacy, security of information shared in the platform, and integrity of information shared are all concerns when using this type of Web application. J Am Pharm Assoc. 2015;55:e295–e300. doi: 10.1331/JAPhA.2015.14171
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T
he use of social media by health professionals to deliver patient care has garnered much debate over the past few years since the creation and viral expansion of multiple online social media sites. The term “social media” was derived from the evolution of Web 2.0 applications that are inherently open and social in nature and integrate user-added value into traditional Web platforms.1 Multiple organizations have implemented policies and recommendations for appropriate social media use by members over the past few years.2,3 Most recently, the House of Delegates of the American Pharmacists Association (APhA) approved official policy regarding the use of social media during the 2014 Annual Meeting and Exposition in Orlando, Florida.4 Delegates to the APhA House debated many issues related to social media including the role of social media in the delivery of patient care. References to social media during discussions typically entice images of the most common sites (e.g., Facebook, Twitter, LinkedIn, Google+). But social media encompass a much wider range of tools that allow users to post information and make it available to a large audience. The networking component of social media explains the interactions between the users and the engagement that follows. While these websites are widely
Key Points Background: ❚❚ Social media applications are widely accepted for social and networking purposes; however, their use among health professionals and in the delivery of patient care is controversial. ❚❚ Multiple organizations have implemented policies and recommendations for appropriate social media use by members over the past few years, including the American Pharmacists Association. Findings: ❚❚
❚❚
❚❚
Social media platforms have the potential to engage patients and help practitioners overcome multiple barriers in the delivery of health care. Maintaining patient privacy, security of information shared in the platform, and integrity of information shared are all concerns when using this type of Web application. Overall, the literature reinforced the need to balance the dilemma of tapping the positive potential of social media in patient care with the negative repercussions that come with uncontrolled user-generated content.
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accepted for social and networking purposes, their use among health professionals and in the delivery of patient care is controversial. Issues and concerns with social media regarding potential pitfalls for pharmacists have been well documented.5–7 This narrow focus of grouping all social networking sites with the most commonly used may prevent practitioners from exploring other websites built on interactive Web platforms, such as PatientsLikeMe, that may not have the same privacy or security concerns. Limited understanding of social media as well as examples of improper use may blunt innovation involving interactive applications in ways that might enhance clinical outcomes. This review aims to add to the discussion by examining current published examples of social media applications being used in health care settings to deliver patient care.
Methods A search of the literature was conducted on June 11, 2014, using PubMed, MEDLINE, CINAHL, and Communication Abstracts databases for clinical studies between 2004 and 2014. A combination of the search terms “social media” or “Web 2.0” or “online social networking” or “Facebook” or “Twitter” AND “patient care” or “health care” was used. In addition to the database search, 42 additional abstracts were retrieved from PatientsLikeMe (www.patientslikeme.com) for review. Only published, peer-reviewed journal articles were considered, and only publications in English were included. The abstracts were screened by the author for relevance to Web-based social media platforms being used in patient care activities. Studies that were not specific to social media and addressed traditional Web applications lacking the interactive features typically seen in Web 2.0 were excluded. In addition, studies of non–patient care activities of health professionals (e.g., teaching, organizational use of social media) were not included in the final review. After the final review, any emerging themes were evaluated qualitatively by the author.
Study selection The initial search of the databases and PatientsLikeMe yielded 2,259 abstracts for screening. Abstract screening resulted in 42 full-text articles to be assessed for eligibility. During assessment, seven articles were excluded from the review based on multiple factors as identified in the PRISMA statement (Preferred Reporting Items for Systematic Reviews and Meta-Analyses; http://www.prisma-statement.org; Figure 1). After completing the identification, screening, and eligibility process, 35 relevant peer-reviewed journal publications were included in this analysis.8–42 For all included articles, data on the following items were collected: authors, year published, country, topic area, study Journal of the American Pharmacists Association
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PubMed, MEDLINE = 2,157 CINAHL, Communication abstracts = 60
PatientsLikeMe = 42
Screening
Abstracts screened = 2,259
Eligibility
Excluded = 2,217
Full-text articles assessed for eligibility = 42
Included
Identification
Figure 1: Literature review flow diagram in accordance with the PRISMA Statement.
Included in analysis = 35
Exclusion based on lack of relevance to webbased social media platforms used in patient care activities.
Excluded = 7
Rationale: not social media specific, not specific for patient care, not meeting the definition of “social media,” not a full study, and only focused on study recruitment.
Figure 1. Literature review flow diagram in accordance with the PRISMA statement design, social media tool used, sample size, methods, results, and discussion. The 35 peer-reviewed studies included for this review are summarized in Table 1 (available online in the Supplemental Content section of this article on JAPhA.org).
Results Of the 35 studies reviewed, 19 (54%) were cross-sectional studies, 5 (14%) randomized controlled trials, 4 (11%) case studies, 6 (17%) prospective cohorts, and 1 (3%) case–control study design. Of the 35 studies, 23 (66%) were conducted in the United States. The remaining 12 (34%) were from Canada, Australia, New Zealand, Ireland, the United Kingdom, Mexico, the Netherlands, and the Democratic Republic of Congo. While the search included the full decade of 2004 to 2014, the oldest publication included was Gustafson et al. from 2008. The studies covered a wide variety of topic areas including asthma, weight management, women’s health, psychiatry, neurology, diabetes, cardiology, palliative care, urogynecology, chronic disease state management, dermatology, orthodontics, insomnia, research methods, and infectious disease. Sample sizes also varied greatly from small case studies with Journal of the American Pharmacists Association
one patient to a cross-sectional study with 1,924 patients. The study by Tweet et al. was defined as a case study for the purposes of this review as it focused on describing a process to recruit twelve patients but did not compare results of the twelve patients. While Facebook was the predominant Web 2.0 application studied, the articles included in the review used various social media platforms including Twitter (8 articles), YouTube (3 articles), Inspire (1 article), PatientsLikeMe (2 articles), and other proprietary social media websites or personal blogs (7 articles). Four articles included in the review came from social media platforms that were not specified. The following recurring themes were found in the discussions of the 35 publications: (1) overcoming barriers, (2) engaging and empowering patients, (3) enhancing research, (4) providing information for health promotion, (5) scratching the surface, and (6) social media pitfalls.8–42 Overcoming barriers Multiple studies in this review examined opportunities where social media could be used to break down existing barriers to patient care. These included patientreported barriers to care, financial barriers, and accesj apha.org
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sibility of care.18,25,36 Social media applications could be used to circumvent current patient-reported barriers of treatment for such as lack of time, not wanting to take medication, stigma associated with a disease, lack of childcare, and the cost of treatment.18 Online interventions have the potential to alleviate some of these concerns because of increased flexibility, convenience, and ability to operate from the comfort of home. Two studies in this review demonstrated the remote capabilities of social media to connect providers and allow for more specialized care in underserved populations.25,36 Garcia-Romero et al. used Facebook to provide dermatology consults to general practice sites in rural parts of Mexico.25 Leow et al. provided an example of Twitter connecting a physician serving in a free clinic in the Democratic Republic of Congo to a board-certified radiologist in India for a telemedicine consult to confirm a patient diagnosis.36 Empowering patients Enhancing self-management of certain diseases appeared to be a potential positive use of social media in patient care. Empowering patients refers to the strategies used by investigators to engage patients and increase participation in their care. Multiple interventions were introduced through new technologies to address the issue of adherence.8,17,28 Interactive groups with added interventions (goal setting, self-monitoring, and social support) provided an effective medium for positive patient outcomes when compared with the control group or a group without added interventions.28 Enhancing research Patient recruitment and retention were potential benefits of new social media technologies in multiple studies.13,19,41,42 Enhancing research describes the different tactics investigators employed to improve weaknesses in current research designs. The cost of conducting large clinical trials over a long period of time is typically a limiting factor for researchers. Losing contact with patients enrolled in the trial diminishes statistical power as sample size decreases. Social media technologies could be incorporated to reduce costs and retain study participants.19 The increasingly popular www.patientslikeme.com website has begun to explore new research opportunities by using information gathered through social media applications.41,42 Researchers are harnessing the power of interactive Web 2.0 technologies to gather information directly from patients. Providing information for health promotions Less controversial themes of social media use include providing patient education and increasing health promotion.10,12,16,20,22,27,38 Information and health promotion e298 JAPhA | 5 5 :3 | M AY /JUN 2 0 1 5
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includes the general use of social media sites for patients to find information and the specific use of these sites for providers to promote good health practices. A randomized controlled trial of 143 patients showed that the use of social media as an adjunct to traditional in-office counseling had a significant impact on patient contraceptive knowledge.10 This was the most powerful example of social media enhancing patient care services versus traditional forms of information given to patients. While this study did not demonstrate direct patient care being delivered through a social media platform, it provided interesting evidence of patients retaining more information from social media. Multiple studies demonstrated the impact Facebook could have on information dissemination and health care campaigns, especially because of the size of the potential audience.12,22 Scratching the surface Two case studies of individual patients included in this review tapped into areas that were less obvious. The first discussed the case of a 52-year-old black patient diagnosed with bipolar disorder type I and posttraumatic stress disorder who created a Facebook account simultaneously while entering into psychotherapy. Using Facebook, the patient reversed his isolative behavior and increased socialization. The authors concluded this case study was an example of the power of social media as a nonthreatening medium to build or rebuild personal connections and overcome isolation tendencies acquired from previous traumatic events.11 Lowney and O’Brien described an interesting case study of a 30-year-old patient admitted to hospice care for palliative therapy during the end stages of disease. While in hospice, this patient used his personal blog to describe his physical and psychological status. The patient expressed considerable distress and described how he felt cheated of the life he was destined to live.14 These individual social media cases suggest that there are untapped areas of health care that could be further studied to identify potential utility for patients. Social media pitfalls Throughout the review, recurring discussions of drawbacks provided cautionary insight into the use of social media in patient care. “Pitfalls” includes the risks—actual or perceived—and other potential problems that researchers have identified with the use of social media in patient care practices. Privacy concerns are frequently cited as barriers to social media use.8,9,31 As with many emerging technologies, access to information should be evaluated and safeguards put in place to reduce the risk of privacy breach. In some cases, social media users are making conscious choices to share health information in order to receive a potential benefit.41,42 Accuracy and quality of Journal of the American Pharmacists Association
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information published on social media applications raise concerns as well. Multiple studies described an abundance of marketing information posted on social media sites, which may have inherent bias regarding appropriate treatment.16,29 In addition to the positive influence social media can have on health information, researchers also found a potentially ugly side of usercreated content from inappropriate jokes about seizures to pure product promotion.16,27
Discussion Overall, the literature reinforced the need to balance the dilemma of tapping the positive potential of social media in patient care with the negative repercussions that come with uncontrolled user-generated content. The ability to produce and publish information has moved well beyond the walls of a structured organization or university into the hands of anyone with an Internet-enabled phone or device. While social media has the ability to spread information quickly to the public, it is important that health professionals play a role in improving the overall accuracy and quality of the information. A major challenge for practitioners using social media for patient care purposes will be to identify and mitigate the actual risks involved with the technology compared with the current standard. In addition to managing the actual risks, the practitioner must also take steps to reduce the perceived risks that are often associated with social media, especially patient experience with other online sites.5,6,8,9,31 Practitioners are required to maintain privacy protections for patients; however, a sometimesoverlooked fact is that patients are free to disclose their health information in any way they choose. In some cases, patients choose to share personal health information in order to capitalize on potential benefits. The social media conversation often begins on platforms such as Facebook or Twitter due to the enormous brand recognition of these websites. This review is consistent with that trend. However, the conversation does not stop with these two, as several other innovative sites meeting the definition of social media have emerged and are being used to achieve positive outcomes for patients.8,13,15,17,39–42 The increasing rate of research involving social technologies will provide more useful guidelines and “lessons learned” for future patient care interventions with existing technologies or the development of new online tools more suitable for health care. This review revealed multiple examples of practitioners attempting to use social media applications to enhance clinical outcomes in their respective fields. While social media applications may provide a useful place and opportunity to interact, the evidence reinforces the importance of the “interactive” component and speaks to the social networking aspect of the media. If the engagement is too passive or does not empower the patient, it may be no more effective than a placebo. While Journal of the American Pharmacists Association
the publications in this review provide examples for potential use, the lack of rigorous study in this area suggests that further research must be conducted before the clinical benefits of social media integration into clinical practice can be determined. These initial findings, however, suggest the potential for appropriate social media use in health care.
Limitations Limitations of this type of review include both publication and selection bias. Although the search was conducted over an entire decade, relevant studies had only been published in the past 6 years. Considering Web 2.0 applications are still a relatively recent phenomenon, one might expect an increase in publications over the next few years. Of the 35 studies included in this study, 17 were published since 2013. Another limitation in this review was the lack of rigorous studies of social media and clinical outcomes, as there are few articles with data from randomized controlled trials. While perceived risks are well documented, one of the major gaps that exist is a lack of investigation into the actual risks with using social media compared with other technologies. Are patients with social media profiles more likely to experience a breach of privacy than patients who stay away from these sites but use electronic mail for communication with a health professional? Additional studies including interventions with other types of social media applications beyond Facebook or Twitter would add more value to this review and to the broader view of Web 2.0 applications.
Conclusion Social media platforms have the potential to help patients and practitioners overcome multiple barriers in the delivery of health care. Maintaining patient privacy, security of information shared in the platform, and integrity of information shared are all concerns when using this type of Web application. Experiments with social media platforms are being conducted in multiple therapeutic areas, and further research is required to determine the potential risks and benefits of using social media to improve clinical outcomes. Reference 1. Cain J, Fox BI. Web 2.0 and pharmacy education. Am J Pharm Educ. 2009;73(7):120. 2. American Society of Health-System Pharmacists. ASHP statement on use of social media by pharmacy professionals: developed through the ASHP pharmacy student forum and the ASHP section of pharmacy informatics and technology and approved by the ASHP Board of Directors on April 13, 2012, and by the ASHP House of Delegates on June 10, 2012. Am J Health-Syst Pharm. 2012;69(23):2095–2097. 3. American Medical Association. AMA policy: professionalism in the use of social media. Chicago, IL: American Medical Association; 2010.
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6. Cain J, Fink JL. Legal and ethical issues regarding social media and pharmacy education. Am J Pharm Educ. 2010;74(10):8. 7. Clauson KA, Seamon MJ, Fox BI. Pharmacists’ duty to warn in the age of social media. Am J Health-Syst Pharm. 2010;67(15):1290–1293. 8. Panzera AD, Schneider TK, Martinasek MP, et al. Adolescent asthma self-management: patient and parent-caregiver perspectives on using social media to improve care. J Sch Health. 2013;83(12):9219–9230. 9. Woolford SJ, Esperanza Menchaca AD, Sami A, et al. Let’s face it: patient and parent perspectives on incorporating a Facebook group into a multidisciplinary weight management program. Child Obes. 2013;9(4):305–310. 10. Kofinas J, Varrey A, Sapra K, et al. Randomized controlled trial of adjunctive social media for more effective contraceptive counseling. Obstet Gynecol. 2014;123(5):107S. 11. Veretilo P, Billick SB. Psychiatric illness and Facebook: a case report. Psychiatr Q. 2012;83(3):385–389. 12. Greene JA, Choudhry NK, Kilabuk E, et al. Online social networking by patients with diabetes: a qualitative evaluation of communication with Facebook. J Gen Intern Med. 2011;26(3):287–292. 13. Tweet MS, Gulati R, Aase LA, et al. Spontaneous coronary artery dissection: a disease-specific, social networking community-initiated study. Mayo Clin Proc. 2011;86(9):845–850. 14. Lowney AC, O’Brien T. The landscape of blogging in palliative care. Palliat Med. 2012;26(6):858–859. 15. Roblin DW. The potential of cellular technology to mediate social networks for support of chronic disease self-management. J Health Commun. 2011;16(suppl 1):59–76. 16. Alas A, Sajadi KP, Goldman HB, et al. The rapidly increasing usefulness of social media in urogynecology. Female Pelvic Med Reconstr Surg. 2013;19(4):210–213. 17. Lorig K, Ritter PL, Plant K, et al. The South Australia health chronic disease self-management Internet trial. Health Educ Behav. 2013;40(1):67–77. 18. Maloni JA, Przeworski A, Damato EG. Web recruitment and Internet use and preferences reported by women with postpartum depression after pregnancy complications. Arch Psychiatr Nurs. 2013;27(2):90–95.
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Table 1. Summary of peer-reviewed studies relevant to social media and patient care
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Table 1. Summary of peer-‐reviewed studies relevant to social media and patient care. Author Panzera, Schneider, Martinasek, et al.
Year Country 2013 United States
Topic Area Asthma
Study Design Cross-‐sectional study
Cross-‐sectional study
Woolford, Menchaca, Sami, and Blake
2013 United States
Weight Management
Kofinas, Varrey, Sapra, et al.
2014 United States
Women's Health RCT
Veretilo and Billick
2012 United States
Psychiatry
Case Study
Greene, Choudhry, Kilabuk, and Shrank
2010 United States
Diabetes
Cross-‐sectional study
Tweet, Gulati, Aase, and Hayes
2011 United States
Cardiology
Case Study
Lowney and O'Brien
2011 Ireland
Palliative Care
Case Study
Roblin
2011 United States
Diabetes
Prospective Cohort
Alas, Sajadi, Goldman, and Anger
2013 United States
Urogynecology
Cross-‐sectional study
Lorig, Ritter, Plant, et al.
2012 Australia
General Health and Wellness
Prospective Cohort
SM Tool Not specified
Sample n = 36; 18 caregivers and 18 patients
Methods Results Discussion 18 teen patients with asthma were asked 21 open-‐ended questions; 18 caregivers All teens interviewed had cell phones; all teens agreed the best method to deliver Creation of a digital media resource was embraced by both parents and were asked 17 open-‐ended questions reminders and alerts was through text messaging; willingness to participate in a social teens, particularly with respect to receiving medication reminders, symptom media site for asthma varied; factors making a social media site difficult included strangers and allergy alerts, weather conditions that can alter asthma risk, and in the group, lack of focused discussion, disclosure of personal information to others, and education. geographic location Facebook n = 32 In depth interviews of 11 adolescents and 21 parents focusing on perceptions of Overall, participants believed a Facebook group would be a positive addition to the weight Participants were enthusiastic about the potential of a "secret" Facebook using a program-‐specific Facebook group as an adjunct to treatment in a management program; most frequently mentioned benefit was to allow participants to stay group page for the weight loss program and believed it would have positive multidisciplinary weight management program connected, bond with each other, and gain more support for their efforts; most agreed it effects. was important to create a "secret" group; need for monitoring and rules of participation; all had concerns about privacy and security; parents and adolescents agreed parents should have their own group site Facebook n = 143; n = 69 in English-‐speaking women between 18-‐45 years old were randomized to receive Median raw Contraceptive Knowledge Inventory score post intervention was significantly Social media as an adjunct to traditional in-‐office counseling is a powerful intervention arm; n = 74 standard contraceptive education and pamphlet compared with the intervention higher in the Facebook intervention arm compared with control; Patient satisfaction with tool that improves patient contraceptive knowledge and increases patient in control arm of standard contraceptive education and Facebook group information counseling method was significantly higher in the Facebook group; Patient contraceptive preference for LARC preference for long-‐acting reversible contraceptives was significantly higher in the Facebook group arm Facebook n = 1 52yo African American patient diagnosed with Bipolar Disorder type I and Post Patient gradually "befriended" several former high-‐school and college classmates, his son This case highlights the impact of modern social media on patients and Traumatic Stress Disorder (PSTD) in psychotherapy for 1 year created a Facebook (whom he had not maintained contact for several years) and his ex-‐wife (whom he had not potential for use in therapy. For this patient, Facebook served as a non-‐ account in addition to therapy for his isolative symptoms contacted for 8 years); Patient eventually went from being a recluse to establishing a circle threatening medium to reach out to people previously known from his past of friends and transition interactions online to the real world and help build relationships to overcome isolation tendencies from previous traumatic events. Facebook n = 690 individual posts Using Facebook search function and the word "diabetes" in the title of Facebook 66% of posts sampled described users' personal experiences with diabetes management; Diabetes communities on Facebook included a variety of members including on wall pages and groups, the researchers identified the 15 most recent wall posts in the 15 largest 24% of posts shared sensitive aspects of diabetes management unlikely to be revealed in patients, family members, advertisers and researchers; These groups serve discussion boards groups and the 15 most recent discussion topics from the 10 largest groups and doctor-‐patient interactions; 27% of all discussion threads and wall posts included explicit simultaneously as promotional spaces, support communities, repositories for written by 480 unique aggregaited quotes into a database. product promotion and a majority of this promotion was for dietary supplements and recruitable research subjects, and venues for gaining disease state users natural cures for diabetes information; Inability to verify the identity of a poster of non-‐FDA-‐approved therapeutic modalities; Inspire n = 1 study (describes 1 A member of a social networking internet site (www.inspire.com) designed for Within 7 days of IRB approval, 18 women had requested study information and enrollement The use of a social network provided quick response and ease of recruitment example where social women with heart disease with a diagnosis of a rare cardiac condition documents and the first 12 to complete consent forms were enrolled. Within 8 months, all for patient-‐initiated research questions and could be customized for the media was used to Spontaneous Coronary Artery Dissection (SCAD) approached one of the authors participant questionnaires, records, and coronary angiograms were obtained and reviewed. study of other rare diseases. initiate a study) and advocated for further research on condition. Researches then designed a virtual multicenter SCAD registry by recruiting participants from a social networking site Personal blog n = 1 30yo patient admitted to hospice care utilized a personal blog to describe in The patient used the blog to express considerable existential distress. He saw little This case challenged hospice staff to consider social media as a method of detail his physical and psychological status and also contained messages of meaning in his suffering and felt cheated of the life he was destined to live. The blog also communication in life-‐limiting illness. The new communication network support from others with similar diagnoses reflected his determination to fight. The blog attracted local media attention and hospice included the patient, family and hospice staff, but was also open and freely care became the subject of debate on a local radio show. accessable to the public. The relative anonymity of the blog allowed the patient to more freely express his true feelings and emotions. The blog allowed hospice staff to gain rare insights into the patient's emotional and spiritual experience during the course of his illness. Proprietary online n = 15 Three phases: an enrollement session, a 3-‐month mobile information All participants connected and made at least 1 SMBG transmission; 7 patients transmitted 4 Mobile ICT systems offered some advanteges when integrated into medical application communication technology (ICT) trial period, and a disenrollement session to or more times per week, 8 patients transmitted 3 or less times per week; Transimissions care for the purpose of motivating recommended self-‐management collect preliminary data on the usability of mobile ICT for self-‐monitoring of blood indicated that 10 of the 15 patients monitored their blood glucose at least 1-‐2 times per practices. glucose (SMBG) adherence and value added of peer support; the patient's day; Mobile usability was not a problem; Feedback from patients indicated use of mobile primary care physician was not included in the social network as the pilot study ICT facilitated developing and reinforcing emotial support was focused on peer support Facebook, Twitter, n = 817 search items Key word searches were performed on Facebook, Twitter, and YouTube on Jan. 2, 406 (50%) were medically relevant; 226 (56%) of the informative results were written by A wide range of useful information was found depending on the search term. and YouTube 2012 using clinical terms pertaining to urogynecology health professionals; 140 (17%) were commercial advertisements; 8 (1%) were humorous It appeared that the more specific the search term, the more useful the information. Non-‐useful information also varied widely depending on the search phrase. Proprietary online n = 144 An Internet Chronic Disease Self-‐Management Program (ICDSMP) was designed 4 of 8 general health indicators showed significant improvement at 6 months; 5 of 8 health This social media tool appeared to be feasible and effective in decreases application as an intervention and tested on 254 recruited individuals in South Australia. For indicators showed significant improvement at 1 year; Example: Emergency room utilization multiple disease symptoms and imrpoving multiple health behaviors at 6 6 weeks, participants log on at will for 1-‐2 hours each week to complete weekly decreased signficantly at 6 and 12 months; months and 1 year. The reduction of emergency room visits is promising but activities. 254 began the study at baseline but only 144 patients completed the 6-‐ further study is needed to see if it could be effective in the United States. month questionnaire, but 194 completed the 12-‐month follow-‐up questionnaire.
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Maloni, Przeworski, and Damato
2013 United States
Women's Health Cross-‐sectional study
Not specified
n = 53
Mychasiuk and Benzies
2011 Canada
Research Methods
Facebook
n = 65
Sharma, Kilian, and Leung
2014 Canada
Infectious Disease Cross-‐sectional study
Facebook and Twitter
n = 52
Ahmed, Sullivan, Schneiders and McCrory
2010 New Zealand
Neurology
Cross-‐sectional study
Facebook
n = 145 posts
Cameron, Massie, Alexander, et al.
2013 United States
Organ Donation
Cross-‐sectional study
Facebook
N/A
Egan, Koff and Moreno
2013 United States
Psychiatry
Cross-‐sectional study
Facebook
n = 34
Espie, Kyle, Williams, et al.
2012 United Kingdom
Insomnia
RCT
Proprietary online n = 164 application
Garcia-‐Romero, Prado, Dominguez-‐Cherit, et al.
2011 Mexico
Dermatology
Prospective Cohort
Facebook
n = 44
Mackert, Kim, Guadagmo and Donovan-‐Kicken.
2012 United States
Women's Health Prospective Cohort
Twitter
n = 295; n = 247
Mcneil, Brna and Gordon
2012 Canada
Neurology
Twitter
n = 1504 tweets
Prospective Cohort
Cross-‐sectional study
An exploratory descriptive survey of women who self-‐report feelings of Postpartum Depression (PPD) was completed to assess barriers to treatment, current internet use for PPD-‐related information and the feasibility of social media for sample recruitment.
Barriers were consistent with previous studies (lack of time, not wanting medication, stigma Major patient-‐reported barriers to PPD treatment could be circumvented associated with PPD, lack of childcare and cost of treatment); Data was contrary to the through internet and social media-‐based interventions. Social media and the viewpoint that women may be reluctant to disclose depressive symptoms and supports the internet are also a promising means to recruit a national sample of women efficiency of an internet study where subjects may remain anonymous; 54.7% of women with PPD symptoms. reported seeking information about PPD and of these, 69% used the internet for there search; 90% of the women reported they would use the internet to learn about way to obtain help for PPD; in addition 60% wanted to blog with other mothers and 44% wanted to chat with other mothers about PPD; 65% wanted a chat room moderated by an expert in PPD Facebook was incorporated into the methods of contacting and retaining study Use of the Facebook Protocol for retention reduced participant loss by 16%. Of the 120 Using social media, investigators were able to reduce participant attrition by participants in a longitudinal research program evaluating a pre-‐school program students originally in the study, 65 failed to respond to traditional methods. Of this 65, 19 16% in a "difficult-‐to-‐trace" population. While further studies are needed to developed to promote literacy. After traditional retention protocols failed a (29%) were successfully contacted and able to participate in the study follow-‐up due to demonstrate effectiveness on a broad scale, this program demonstrates "Facebook Protocol" was initiated contacting the participants with two separate Facebook contact. another possible use of social media in clinical research. Facebook messages. During the 2011-‐2012 flu season, 52 eligible patients completed a 10-‐item survey Half of the respondents use Facebook and/or Twitter; 16.3% of the respondents used the The sample size was too small to demonstrate a clear relationship between collecting data on sociodemographics, Internet usage, social networking habits, clinic's Facebook page; 9.6% of the respondents used the clinic's Twitter page, and 13.5% of use of social networking reminders and increased vaccination rates. and reason for vaccination (the clinic's newly created Facebook and Twitter the respondents received their vaccination due to the clinic's social networking reminders. reminders were one of the answer options) In April 2009, 472 Facebook groups were screened using the search term Of the posts where the mechanism of the concussion could be identified, sports While a small portion of users were looking for advice, a majority of people "Concussion" through the Facebook search facility. Groups desiged to host participation was largest causative factor (33%). The majority of postees (65%) used were using this medium to relate their personal experiences regarding brain interactions on concussion and had at least one group posting on the wall were Facebook concussion groups to relate to personal experience regarding a concussive injury. injury. The role of Facebook providing a supportive function was appreciated included. Of the 472 groups, 17 groups met the criteria and 145 posts were 8% of postees chose to seek explicit information relating to concussion and 2% offered by the members. Peer suport has been considered a positive method of included for the study. explicit advice. Accuracy of information was not assessed in this study. transfering knowledge to concussion to young athletes, so the role of Facebook facilitating that could be beneficial. Researchers measured the number of Facebook organ donor profile updates from On the first day of the initiative, there were 13,012 new online donor registrations across This study demonstrated the immediate impact of a social media-‐based May 1, 2012 to May 28, 2012 as Facebook altered its platform to allow members 44 states, which was a 21.2-‐fold increase over the baseline daily registration rate of 616. intervention to increase organ donor registration. to specify "Organ Donor" as a part of their profile. However, data of new online The number dropped over the next 12 days but remained at an elevated rate. The total registrations was available from May 1, 2012 to May 13, 2012 to measure number of new registrations over the 13-‐day study period was 39,818, or 32,958 above the changes in online registration to actual organ donor lists. basline registration rate. Focus groups of male and female college students at the University of Wisconsin-‐ Themes identified during analysis of the focus group discussions included: 1) Students' The authors concluded that Facebook may provide opportunities for peer Madison were held and conducted by a trained facilitator between 45-‐60 views of mental health status updates varied from being either a serious call for help to intervention. The high prevalence of mental health references on social minutes. To stimulate discussion, participants were asked to discuss their online jokes or attention-‐seeking behavior; 2) Very few gender differences existed in displays of networking sites and the awareness of these references by college students experiences and to view hypothetical Facebook status updates that referenced mental health status updates; 3) Responses to mental health status updates by Facebook may help future peer interventions efforts on campus. feeling depressed or anxious. users reflected offline relationships. 164 patients were randomized into 3 arms, 55 patients in the Online Cognitive Online CBT was associated with an absolute post-‐therapy increase of 19.5% of sleep CBT delivered using advanced web-‐based tools demonstrated better sleep Behavioral Therapy group, 55 patients in the online imagery relief (placebo) outcome measures compared to 5.7% placebo and 6.4% treatment as usual. outcomes compared to placebo and treatment as usual. Standardization of group, and 54 patients into a treatment as usual (TAU) group. The online CBT online CBT may offer additional quality assurance compared to training consisted of 6 weekly sessions delivered by an animated "virtual therapist" and therapists. The technology also offers the additional benefits of time comprised of a fully automated media-‐rich web application, driven by basline, stamped page views, entries and interactions. adherence, performance, and progress data. Underlying algorithms allowed for the delivery of information, support, and advice in a personally tailored manner. Participants would also get text alerts from the virtual therapists or from other participants on the virtual community. Dermatologic patients at a rural clinic were seen by a general practitioner who Of the 44 patients consulted over 3 months, 75% demonstrated clinical improvement with The authors discussed that teledermatolgoy is an ideal option for common took digital pictures and uploaded relevant clinical information to a Facebook the treatments indicated by the dermatology consults. skin diseases that can be treated by a general practitioner in a addition to a group where only the physicians who were a part of the teledermatology consult teleconsult by a dermatolgist. They concluded that using the Facebook could see the information. platform was easy and was a very practical option for patients with little access to dermatology care. Two studies were discussed including an online survey instrument in one and an The studies found no significant differences between the groups and of the participants The study hypotheses were not supported and the researchers discussed online survey plus analyzing "retweet" behavior from study participants following only 1 person actually retweeted the multivitamin promotional tweet. some of the limitations. For example, college-‐aged females may not be promotional priming for multivitamins. The purpose was to identify if thinking about pregnancy or inclined to follow a Twitter account dedicated to participants exposed to multivitamin promotional messages would exhibit more prenatal health. In addition, the tweets promoting multivitamins were from positive beliefs about multivitamins and will they exhibit stronger intentions to accounts unknown to the participants, potentially diminishing the credibility. start a multivitamin. A prospective qualitative content analysis was conducted using seizure-‐related 32% of tweets were metaphorical, 31% were personal accounts, 12% were informative, 9% 41% of all Twitter posts references seizures were either metaphorical or Twitter status updates. Only English results were used and retweets and were ridicule/joke, 8% miscellaneous, 6% opinion, and 2% were advice seeking ridicule/joke themes, which were generally derogatory in context. Tweets duplicates were excluded. In addition, tweets using the term "seizure" out of such as "I can't tell if this guy is having a seizure or dancing" perpetuates the context were excluded. Data was collected from March 31 to April 2, 2011, demeaning stereotypes for the patients living with these experiences. excluding April 1st due to "April Fools Day" comments.
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Napolitano, Hayes, Bennett, et al.
2013 United States
Weight Management
Omurtag, Jimenez, Ratts, et al.
2012 United States
Weitzman, Kelemen, Quinn, et al.
RCT
Facebook
n = 52
Women's Health Cross-‐sectional study
Not specified
n = 384 clinics
2013 United States
Diabetes
Proprietary online n = 613 application
Antheunis, Tates, and Nieboer
2013 Netherlands
Women's Health Cross-‐sectional study
Facebook, Twitter, n = 139 patients; n = LinkedIn and 153 health care YouTube professionals
Shive, Bhatt, Cantino, et al.
2013 United States
Dermatology
Twitter
Mayer and Harrison
2012 United States
Infectious Disease Case-‐control study Facebook
n = 710
Scanfeld, Scanfeld, and Larson.
2010 United States
Infectious Disease Cross-‐sectional study
Twitter
n = 971
Henzell, Knight, Antoun, and Farella
2013 New Zealand
Orthodontics
Cross-‐sectional study
Not specified
n = 130
Leow, Groen, Sadasivam, and Kushner
2011 Democratic Radiology Republic of Congo
Case Study
Twitter
n = 1
Wong, Stevenson, and Selwa
2013 United States
Neurology
Cross-‐sectional study
YouTube
n = 100
Young and Jaganath
2013 United States
Infectious Disease RCT
Facebook
n = 112
Prospective Cohort
Cross-‐sectional study
n = 8,192 high-‐impact tweets
52 college students between 18-‐29 years, BMI of 25-‐50kg/m2, and healthy Facebook Plus group weight loss was statistically significant when compared to the regular The results demonstrate the feasiblity of a weightloss program for college enough to participate in physical activity were recruited and randomly assigned Facebook and Waitlist groups at 4 and 8 weeks. Weight loss by the regular Facebook group students on Facebook. It also demonstrates that the mere creation of a to three groups: Facebook (n=17), Facebook Plus text messaging and personalized was not statistically different from the Waitlist group. weightloss group may not be enough, but added interaction and reminders feedback (n=18), and Waiting list control group (n=17). Program was for 8 weeks. may be necessary to be effective. Facebook group included joining a private group with access to handouts and podcasts. Facebook Plus group had access to a similar group but also received additional intervention targets (goal setting, self monitoring, and social support via text messaging). 384 Society for Assisted Reproductive Technology (SART) member clinics were Nearly all (96%) of the clinics have a website available with 30% linking to a social The authors discussed concerns about accuracy of information and concerns identified and evaluated based on availability of a website and links to social networking site. Of the clinics with a social networking site, the posts from the clinics were about marketing practices. networking. In addition, 1,382 social networking posts were evaluated. evaluated and categorized by the authors. 31% of the posts were providing information, 28% were advertising, 19% were support, and 17% wereirrelevant. Information about recent and severe hypoglycemia were collected from 53.2% of Type 1 patients and 18.2% of Type 2 patients reported experiencing more than 4 The authors concluded that engagement in disease-‐focused social networking respondents between March 2011 and April 2012 using the TuDiabetes.org "lows" in the past 2 weeks. 29.2% of patients reported 1 or more severe hypoglycemic is strong and that harnessing this engagement could enhance population application. Survey respondents reported low glucose values in the past 2 weeks episodes. 31.7% of users opted to display their HbA1c value on thir app profile page. health monitoring and clinic care design. with no specific definition of "low." Severe hypoglycemia was assessed separately 96.6% of the respondents opted to permit future research contact. as the number of occasions in the past 12 months where participants were unconscious, seizing, or requiring medical treatment due to low blood glucose. Researchers also measured hypoglycemia unawareness and adherence with recommended care. In July 2012, an online survey was conducted of patients and health professionals 31.7% of the patients use social media (primarily Twitter) for health-‐related reasons and The barriers for patients that include privacy concerns and reliability of in the specialty of gynecology in the Netherlands. The survey covered motives 26.8% of professionals (primarily LinkedIn). Patients barely used YouTube or LinkedIn for information could actually be helped if they were connected with their own and barriers for the use of social media for health-‐related reasons. health related purposes while health professionals use LinkedIn to increase communication physicians on these sites. The lack of skills reported by professionals provides with colleagues and marketing purposes. Barriers included privacy concerns, unreliability of an opportunity for training and education. information, "no need" for it, and inefficiency. The main barrier for patients was the privacy concern while the main barrier for professionals is that they think it is too expensive or lack the skills for using social media. All tweets that contained 1 or more of 5 key words (pimple, pimples, zit, zits, and Of the 392,617 tweets collected, only 8,192 were included as "high-‐impact" for this study. Twitter is emerging as a popular exchange of information and health acne) from June 10-‐23, 2012 with additional data monitoring including a 1-‐week 43.1% of high-‐impact tweets were personal tweets about acne, followed by 20.4% tweets providers can use to learn about the perceptions and misperceptions of retweet count was collected. "High-‐impact tweets" were defined as tweets with about celebrities and 27.1% educational. diseases. one or more retweets. Researchers used a case-‐control design to study the use of Facebook to provide Students in the intervention groups had higher "attitude" scores compared to controls. For food safety knowledge in general, incorporating the "Food Safety "Food Safety Education" to undergraduate students enrolled in an introductory Intervention groups also had significant improvements in food safety knowledge scores and Education" lecture and material into the course increased student knowldege nutrition course. Students from 6 course sections were used for different more than 50% of the students who received both Facebook and lecture on food safety on the subject in both Facebook and non-‐Facebook groups. The Facebook "treatment" and "control" arms. Outcomes were measured by pre and post indicated that they learned more from the Facebook page. group had significantly better food safety attitudes than did the control or surveys and online focus groups. non-‐Facebook group that received lecture only. Researchers conducted a cross-‐sectional survey of 52,153 Twitter status updates Of the 11 possible categories, the most common categories of "antibiotic" tweets were The study confirmed the use of Twitter for informal sharing of health between March 13, 2009 and July 31, 2009 that mentioned antibiotics. The General Use, Advice and Information, Side effects, Diagnosis, and Misunderstanding or information and advice and the dissemination of both valid and invalid researchers used this list to develop categories of the Tweets and then randomly Misuse. In addition, the researchers found the most popular word combination in the information. selected 1,000 Tweets from the 52,153 to categorize. 29 were excluded because Misunderstanding category was "Flu + antibiotics." they used "antibiotics" as a metaphor, leaving a final n of 971. Patients over the age of 10 visiting the orthodontic clinic at the University of Only 13.3% of respondents reported posting comments about their braces on social media The most common sites used by the study group were Facebook and Twitter. Otago completed questionnaires in July and August of 2012. sites, but 29.5% reported seeing other friends posting comments about braces. 45.7% were Posting of orthodontic treatment experiences on social media sites as well as likely to post photos of their teeth at the end of treatment. 42.6% had difficutly remember the results after braces demonstrated the significance of the treatment to the to wearing removable appliance wear and 69.2% suggested a mobile app could help patient and may motivate others to undergo orthodontic proceedures. improve compliance. 89.2% of respondents had mobile phones with 2/3 of those phones with internet access. During a humanitarian mission to the Democratic Republic of Congo, the medical The radiologist replied confirming the diagnosis of the amoebic liver abscess within 5 The authors discuss the utility of Twitter in the advancement of telemedicine, team used Twitter to contact a board-‐certified radiologist to assist in the minutes of receiving the emailed photo. The abscessed was drained. The patient was but also discuss the potential disadvantages of current social media sites diagnosis of a 29-‐year-‐old patient with an amoebic liver abscess. The physician treated with oral metronidazole and had recovered. where the true identity of the user may not be known. The authors also on site took a photograph of the ultrasound image of the patient's liver using his discussed the potential for breaches of patient confidentiality. Blackberry smartphone. Once the radiologist agreed to consult, the photo was sent over secure email to protect the patient's confidentiality. A YouTube search was conducted in April 2012 using the terms "epilepsy" and 54% of the videos were amateur and 46% were professionally produced. 51% of the videos The authors discuss in the background and discussion how seizures are "seizures" with the results sorted by relevance according to the YouTube were considered accurate and 40% neutral on the accuracy scale. 85% were sympathetic to typically sources for drama in traditional entertainment media and other algorithm. The top 100 video search results were examined. Videos not seizure patients. 48% were easy to understand and 42% used language for layperson. publications found a pessimistic view of social media and epilepsy. According pertaining to neurological seizures were excluded from the top 100. The videos to the authors, this study offers a relatively optimistic view of YouTube's use that were examined were measured by the researchers for accuracy, sympathy to post more accurate and sympathetic information. towards patients with epilepsy, and difficulty level/understandability. 112 men over 18-‐years-‐old living in Los Angeles who reported to having sex with Themes of group discussion included HIV-‐STI prevention and testing, HIV knowledge, HIV The study demonstrates the utility and acceptability of social networking a man in the past 12 months were recruited for the study. 57 were randomly culture, HIV Stigma, HIV advocacy, MSM culture, and general friendly conversation. A technologies for HIV prevention. The study utilized peer leaders to start assigned to the intervention group and 55 assigned to the control group. regression analysis of conversation topics as independent variables and requests for HIV conversations so simply inviting at-‐risk individuals to join a group may not be Measurements included qualitative assessment of conversations recorded in the testing kits as dependent variables demonstrated that participants who discussed HIV enough. group and quantitative data based on the number of requests for home-‐based prevention with other group members were 9 times more likely to request a testing kit than HIV tests that were made available to both intervention and control groups. those who did not discuss HIV prevention.
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Gustafson, Hawkins, McTavish, et al.
2008 United States
Oncology
RCT
Proprietary online n = 257 application
Wicks, Keininger, Massagli, et al.
2011 United States
Neurology
Cross-‐sectional study
PatientsLikeMe
n = 221
Wicks, Sulham, and Gnanasakthy
2013 United States
Research Methods
Cross-‐sectional study
PatientsLikeMe
n = 1,924
Ahmed, Jayasinghe, Wark, et al.
2013 Australia
Research Methods
Cross-‐sectional study
Facebook
n = 278
Women recently diagnosed with breast cancer were randomly assigned to three 5-‐At 2 months, CHESS showed no difference to the controls on the 3 measures, but was The authors discussed the limitations of the study and how overall number of month interventions: internet only, access to the Comprehensive Health significantly better than the internet group. At 4 months, CHESS patients scored logins over time impacted both internet and CHESS groups. At first, patients Enhancement Support System (CHESS), or a control group that received usual significantly higher than controls on Social Support. At 9 months, the CHESS group scored were more engaged but after several weeks the number of logins dropped. care which included their choice of several books on breast cancer. The study significantly higher on Quality of Life and Social Support when compared to the control This study demonstrated the potential for a proprietary interactive support measured quality of life, social support, and health and information competence group, but was not significantly higher than the internet group. site for cancer patients compared to passive information. at 2, 4 and 9 months after start of the study. An online community with PatientsLikeMe.com was set up for epilepsy patients. Prior to using the site, 30% of the respondents did not know anyone else with epilepsy with This survey demonstrated the perceived benefits of an online social 221 patients completed a survey of perceived benefits of the site and community. whom they could talk. Perceived benefits included, finding other patients experiencing the community for patients with epilepsy. same symptoms (59%), gaining a better understanding of seizures (58%), and learning more about symptoms or treatments (55%). Patients within the Organ Transplant community on PatientsLikeMe.com that Of the 3,057 patient accounts created, 1,924 reported information to be included in the This study demonstrated the utility of online social media with regards to created accounts between March 1, 2010 and December 31, 2010 were included. analysis. These patients completed 915 symptom reports, 938 accounts of treatments data collection, particularly the quality of life assessments. Patients were eligible to share information that included demographic and more taken, and 1,215 quality of life assessments were completed. detailed disease state information including: lab values, symptoms, treatments, and quality of life per PLMQOL questionnaire. This was a part of a larger study on young women's health assessing the 76% reported willingness to participate in chlamydia screening by recruitment via an online This study demonstrated the willingness of young women in Australia to be feasability of using social networking sites for recruitement. An advertisement system. 73% were comfortable providing a urine sample collected at home for chlamydia recruited for STD screening via social media platforms. The authors discussed was placed on Facebook between May and September 2010 and was visible to screening. 92.7% were more likely to take a chlamydia test if it was performed at the same the ease of using social media advertisements to get to the target audience. eligible women. Women who clicked on the ad were invited to complete a time as their Pap smear. questionnaire.
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