Innovative patient care practices using social media

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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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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: ❚❚

❚❚

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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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19. Mychasiuk R, Benzies K. Facebook: an effective tool for participant retention in longitudinal research. Child Care Health Dev. 2012;38(5):753–756.

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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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