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1.  Pharmacy Students' Facebook Activity and Opinions Regarding Accountability and E-Professionalism 
Objective
To assess pharmacy students' Facebook activity and opinions regarding accountability and e-professionalism and determine effects of an e-professionalism education session on pharmacy students' posting behavior.
Methods
A 21-item questionnaire was developed, pilot-tested, revised, and administered to 299 pharmacy students at 3 colleges of pharmacy. Following a presentation regarding potential e-professionalism issues with Facebook, pharmacy students with existing profiles answered an additional question concerning changes in online posting behavior.
Results
Incoming first-year pharmacy students' Facebook usage is consistent with that of the general college student population. Male students are opposed to authority figures' use of Facebook for character and professionalism judgments and are more likely to present information they would not want faculty members, future employers, or patients to see. More than half of the pharmacy students planned to make changes to their online posting behavior as a result of the e-professionalism presentation.
Conclusions
There is high social media usage among pharmacy students and many do not fully comprehend the issues that arise from being overly transparent in online settings. Attitudes toward accountability for information supplied via social networking emphasize the need for e-professionalism training of incoming pharmacy students.
PMCID: PMC2769526  PMID: 19885073
online social networking; e-professionalism; Facebook; technology; professionalism
2.  Practical Guidance: The Use of Social Media In Oncology Practice 
Journal of Oncology Practice  2012;8(5):e114-e124.
Social media provide another avenue for community development that patients, particularly those with cancer, are often seeking.
The penetration of social media into modern society has become a worldwide cultural phenomenon. Social media use widely accessible Web-based and mobile technologies to facilitate the creation and sharing of user-generated content in a collaborative and social manner. The uptake of social media in medicine provides new opportunities for health care professionals and institutions to interact with patients and other professionals. Oncologists may use social media as a platform for patient education and authoritative health messaging, for professional development and knowledge sharing, and for direct patient interaction, although this may be fraught with important legal and privacy concerns. In this article, a working group of the ASCO Integrated Media and Technology Committee explores how oncologists might responsibly use social media in their professional lives. Existing social media policies from hospitals, health systems, and pharmaceutical industries are examined to identify common concepts informing the development of future guidelines. Key principles identified include establishing institutional ownership of social media activities and safeguarding protected health information. Furthermore, oncologists must not confuse the roles of provider of information and provider of care, must understand regulations related to state licensure and medical records, and must recognize the importance of transparency and disclosure of potential conflicts of interest. social media may be particularly useful for raising the awareness of and recruitment to clinical trials, but compliance with federal and state regulations and areas under the purview of a local institutional review board must also be ensured. Examples of constructive use of social media in oncology with Facebook, Twitter, and YouTube are provided.
doi:10.1200/JOP.2012.000610
PMCID: PMC3439237  PMID: 23277774
3.  e-Health, m-Health and healthier social media reform: the big scale view 
Introduction
In the upcoming decade, digital platforms will be the backbone of a strategic revolution in the way medical services are provided, affecting both healthcare providers and patients. Digital-based patient-centered healthcare services allow patients to actively participate in managing their own care, in times of health as well as illness, using personally tailored interactive tools. Such empowerment is expected to increase patients’ willingness to adopt actions and lifestyles that promote health as well as improve follow-up and compliance with treatment in cases of chronic illness. Clalit Health Services (CHS) is the largest HMO in Israel and second largest world-wide. Through its 14 hospitals, 1300 primary and specialized clinics, and 650 pharmacies, CHS provides comprehensive medical care to the majority of Israel’s population (above 4 million members). CHS e-Health wing focuses on deepening patient involvement in managing health, through personalized digital interactive tools. Currently, CHS e-Health wing provides e-health services for 1.56 million unique patients monthly with 2.4 million interactions every month (August 2011). Successful implementation of e-Health solutions is not a sum of technology, innovation and health; rather it’s the expertise of tailoring knowledge and leadership capabilities in multidisciplinary areas: clinical, ethical, psychological, legal, comprehension of patient and medical team engagement etc. The Google Health case excellently demonstrates this point. On the other hand, our success with CHS is a demonstration that e-Health can be enrolled effectively and fast with huge benefits for both patients and medical teams, and with a robust business model.
CHS e-Health core components
They include:
1. The personal health record layer (what the patient can see) presents patients with their own medical history as well as the medical history of their preadult children, including diagnoses, allergies, vaccinations, laboratory results with interpretations in layman’s terms, medications with clear, straightforward explanations regarding dosing instructions, important side effects, contraindications, such as lactation etc., and other important medical information. All personal e-Health services require identification and authorization.
2. The personal knowledge layer (what the patient should know) presents patients with personally tailored recommendations for preventative medicine and health promotion. For example, diabetic patients are push notified regarding their yearly eye exam. The various health recommendations include: occult blood testing, mammography, lipid profile etc. Each recommendation contains textual, visual and interactive content components in order to promote engagement and motivate the patient to actually change his health behaviour.
3. The personal health services layer (what the patient can do) enables patients to schedule clinic visits, order chronic prescriptions, e-consult their physician via secured e-mail, set SMS medication reminders, e-consult a pharmacist regarding personal medications. Consultants’ answers are sent securely to the patients’ personal mobile device.
On December 2009 CHS launched secured, web based, synchronous medical consultation via video conference. Currently 11,780 e-visits are performed monthly (May 2011). The medical encounter includes e-prescription and referral capabilities which are biometrically signed by the physician. On December 2010 CHS launched a unique mobile health platform, which is one of the most comprehensive personal m-Health applications world-wide. An essential advantage of mobile devices is their potential to bridge the digital divide. Currently, CHS m-Health platform is used by more than 45,000 unique users, with 75,000 laboratory results views/month, 1100 m-consultations/month and 9000 physician visit scheduling/month.
4. The Bio-Sensing layer (what physiological data the patient can populate) includes diagnostic means that allow remote physical examination, bio-sensors that broadcast various physiological measurements, and smart homecare devices, such as e-Pill boxes that gives seniors, patients and their caregivers the ability to stay at home and live life to its fullest. Monitored data is automatically transmitted to the patient’s Personal Health Record and to relevant medical personnel.
The monitoring layer is embedded in the chronic disease management platform, and in the interactive health promotion and wellness platform. It includes tailoring of consumer-oriented medical devices and service provided by various professional personnel—physicians, nurses, pharmacists, dieticians and more.
5. The Social layer (what the patient can share). Social media networks triggered an essential change at the humanity ‘genome’ level, yet to be further defined in the upcoming years. Social media has huge potential in promoting health as it combines fun, simple yet extraordinary user experience, and bio-social-feedback. There are two major challenges in leveraging health care through social networks:
a. Our personal health information is the cornerstone for personalizing healthier lifestyle, disease management and preventative medicine. We naturally see our personal health data as a super-private territory. So, how do we bring the power of our private health information, currently locked within our Personal Health Record, into social media networks without offending basic privacy issues?
b. Disease management and preventive medicine are currently neither considered ‘cool’ nor ‘fun’ or ‘potentially highly viral’ activities; yet, health is a major issue of everybody’s life. It seems like we are missing a crucial element with a huge potential in health behavioural change—the Fun Theory. Social media platforms comprehends user experience tools that potentially could break current misconception, and engage people in the daily task of taking better care of themselves.
CHS e-Health innovation team characterized several break-through applications in this unexplored territory within social media networks, fusing personal health and social media platforms without offending privacy. One of the most crucial issues regarding adoption of e-health and m-health platforms is change management. Being a ‘hot’ innovative ‘gadget’ is far from sufficient for changing health behaviours at the individual and population levels.
CHS health behaviour change management methodology includes 4 core elements:
1. Engaging two completely different populations: patients, and medical teams. e-Health applications must present true added value for both medical teams and patients, engaging them through understanding and assimilating “what’s really in it for me”. Medical teams are further subdivided into physicians, nurses, pharmacists and administrative personnel—each with their own driving incentive. Resistance to change is an obstacle in many fields but it is particularly true in the conservative health industry. To successfully manage a large scale persuasive process, we treat intra-organizational human resources as “Change Agents”. Harnessing the persuasive power of ~40,000 employees requires engaging them as the primary target group. Successful recruitment has the potential of converting each patient-medical team interaction into an exposure opportunity to the new era of participatory medicine via e-health and m-health channels.
2. Implementation waves: every group of digital health products that are released at the same time are seen as one project. Each implementation wave leverages the focus of the organization and target populations to a defined time span. There are three major and three minor implementation waves a year.
3. Change-Support Arrow: a structured infrastructure for every implementation wave. The sub-stages in this strategy include:
Cross organizational mapping and identification of early adopters and stakeholders relevant to the implementation wave
Mapping positive or negative perceptions and designing specific marketing approaches for the distinct target groups
Intra and extra organizational marketing
Conducting intensive training and presentation sessions for groups of implementers
Running conflict-prevention activities, such as advanced tackling of potential union resistance
Training change-agents with resistance-management behavioural techniques, focused intervention for specific incidents and for key opinion leaders
Extensive presence in the clinics during the launch period, etc.
The entire process is monitored and managed continuously by a review team.
4. Closing Phase: each wave is analyzed and a “lessons-learned” session concludes the changes required in the modus operandi of the e-health project team.
PMCID: PMC3571141
e-Health; mobile health; personal health record; online visit; patient empowerment; knowledge prescription
4.  Social Media: A Review and Tutorial of Applications in Medicine and Health Care 
Background
Social media are dynamic and interactive computer-mediated communication tools that have high penetration rates in the general population in high-income and middle-income countries. However, in medicine and health care, a large number of stakeholders (eg, clinicians, administrators, professional colleges, academic institutions, ministries of health, among others) are unaware of social media’s relevance, potential applications in their day-to-day activities, as well as the inherent risks and how these may be attenuated and mitigated.
Objective
We conducted a narrative review with the aim to present case studies that illustrate how, where, and why social media are being used in the medical and health care sectors.
Methods
Using a critical-interpretivist framework, we used qualitative methods to synthesize the impact and illustrate, explain, and provide contextual knowledge of the applications and potential implementations of social media in medicine and health care. Both traditional (eg, peer-reviewed) and nontraditional (eg, policies, case studies, and social media content) sources were used, in addition to an environmental scan (using Google and Bing Web searches) of resources.
Results
We reviewed, evaluated, and synthesized 76 articles, 44 websites, and 11 policies/reports. Results and case studies are presented according to 10 different categories of social media: (1) blogs (eg, WordPress), (2) microblogs (eg, Twitter), (3) social networking sites (eg, Facebook), (4) professional networking sites (eg, LinkedIn, Sermo), (5) thematic networking sites (eg, 23andMe), (6) wikis (eg, Wikipedia), (7) mashups (eg, HealthMap), (8) collaborative filtering sites (eg, Digg), (9) media sharing sites (eg, YouTube, Slideshare), and others (eg, SecondLife). Four recommendations are provided and explained for stakeholders wishing to engage with social media while attenuating risk: (1) maintain professionalism at all times, (2) be authentic, have fun, and do not be afraid, (3) ask for help, and (4) focus, grab attention, and engage.
Conclusions
The role of social media in the medical and health care sectors is far reaching, and many questions in terms of governance, ethics, professionalism, privacy, confidentiality, and information quality remain unanswered. By following the guidelines presented, professionals have a starting point to engage with social media in a safe and ethical manner. Future research will be required to understand the synergies between social media and evidence-based practice, as well as develop institutional policies that benefit patients, clinicians, public health practitioners, and industry alike.
doi:10.2196/jmir.2912
PMCID: PMC3936280  PMID: 24518354
social media; blogging; social network
5.  Online Social Networking Issues Within Academia and Pharmacy Education 
Online social networking sites such as Facebook and MySpace are extremely popular as indicated by the numbers of members and visits to the sites. They allow students to connect with users with similar interests, build and maintain relationships with friends, and feel more connected with their campus. The foremost criticisms of online social networking are that students may open themselves to public scrutiny of their online personas and risk physical safety by revealing excessive personal information. This review outlines issues of online social networking in higher education by drawing upon articles in both the lay press and academic publications. New points for pharmacy educators to consider include the possible emergence of an “e-professionalism” concept; legal and ethical implications of using online postings in admission, discipline, and student safety decisions; how online personas may blend into professional life; and the responsibility for educating students about the risks of online social networking.
PMCID: PMC2254235  PMID: 18322572
online social networking; e-professionalism; Facebook; MySpace; technology
6.  Mind the Gap: Social Media Engagement by Public Health Researchers 
Background
The traditional vertical system of sharing information from sources of scientific authority passed down to the public through local health authorities and clinicians risks being made obsolete by emerging technologies that facilitate rapid horizontal information sharing. The rise of Public Health 2.0 requires professional acknowledgment that a new and substantive forum of public discourse about public health exists on social media, such as forums, blogs, Facebook, and Twitter.
Objective
Some public health professionals have used social media in innovative ways: to surveil populations, gauge public opinion, disseminate health information, and promote mutually beneficial interactions between public health professionals and the lay public. Although innovation is on the rise, most in the public health establishment remain skeptical of this rapidly evolving landscape or are unclear about how it could be used. We sought to evaluate the extent to which public health professionals are engaged in these spaces.
Methods
We conducted a survey of professorial- and scientist-track faculty at the Johns Hopkins Bloomberg School of Public Health in Baltimore, Maryland, USA. We asked all available faculty via email to complete a 30-question survey about respondent characteristics, beliefs about social media, and usage of specific technologies, including blogs, Facebook, Twitter, and YouTube.
Results
A total of 181 (19.8%) of 912 professor- and scientist-track faculty provided usable responses. The majority of respondents rarely used major social media platforms. Of these 181 respondents, 97 (53.6%) had used YouTube, 84 (46.4%) had used Facebook, 55 (30.4%) had read blogs, and 12 (6.6%) had used Twitter in the prior month. More recent degree completion was the best predictor of higher usage of social media. In all, 122 (67.4%) agreed that social media is important for disseminating information, whereas only 55 (30.4%) agreed that social media is useful for their research. In all, 43 (23.8%) said social media was helpful for professional career advancement, whereas 72 (39.8%) said it was not. Only 43 (23.8%) faculty said they would employ a full- or part-time social media consultant, and 30 (16.6%) currently employed one.
Conclusions
Despite near-universal appreciation of the potential for social media to serve as a component of public health strategy, a small minority are actually engaged in this space professionally, whereas most are either disinterested or actively opposed to professional engagement. Social media is seen by most as more useful for spreading information than obtaining it. As public discourse on a number of critical health topics continues to be influenced and sometimes shaped by discussions online from Twitter to Facebook, it would seem that greater discourse is needed about when and how public health professionals should engage in these media, and also how personal, institutional, and professional barriers to greater use of social media may be overcome.
doi:10.2196/jmir.2982
PMCID: PMC3906700  PMID: 24425670
Internet; social media; public health; blogging
7.  Viewpoint discrimination and contestation of ideas on its merits, leadership and organizational ethics: expanding the African bioethics agenda 
BMC Medical Ethics  2013;14(Suppl 1):S1.
The 3rd Pan-African Ethics Human Rights and Medical Law (3rd EHRML) conference was held in Johannesburg on July 7, 2013, as part of the Africa Health Congress. The conference brought together bioethicists, researchers and scholars from South Africa, Zimbabwe, Kenya and Nigeria working in the field of bioethics as well as students and healthcare workers interested in learning about ethical issues confronting the African continent. The conference which ran with a theme of "Bioethical and legal perspectives in biomedical research and medical practice in Africa with a focus on: Informed consent, HIV-AIDS & Tuberculosis, leadership & organizational ethics, patients and healthcare workers rights," was designed to expand the dialogue on African bioethics beyond the traditional focus on research ethics and the ethical dilemmas surrounding the conduct of biomedical research in developing countries. This introductory article highlights some of areas of focus at the conference including issues of leadership, organizational ethics and patients and healthcare workers rights in Africa. We analyze the importance of free speech, public debate of issues, argumentation and the need to introduce the teaching and learning of ethics to students in Africa in accordance with UNESCO guidelines. This article also focuses on other challenges confronting Africa today from an ethical standpoint, including the issues of poor leadership and organizational ethics which are main contributors to the problems prevalent in African countries, such as poverty, poor education and healthcare delivery systems, terrorism, social inequities, infrastructural deficits and other forms of 'structural violence' confronting vulnerable African communities. We believe that each of the eight articles included in this supplement, which have been rigorously peer-reviewed are a good example of current research on bioethics in Africa, and explore some new directions towards broadening the African bioethics agenda as we move forward to a new dawn for Africa in the 21st century.
doi:10.1186/1472-6939-14-S1-S1
PMCID: PMC3878212  PMID: 24564890
Africa; argumentation; bioethics; leadership; organizational ethics; structural violence; viewpoint discrimination; vulnerable populations
8.  Prevalence and Global Health Implications of Social Media in Direct-to-Consumer Drug Advertising 
Background
Direct-to-consumer advertising (DTCA), linked to inappropriate medication use and higher health care expenditures, is the fastest growing form of pharmaceutical marketing. DTCA is legal only in the United States and New Zealand. However, the advent of online interactive social media “Web 2.0” technologies—that is, eDTCA 2.0—may circumvent DTCA legal proscriptions.
Objective
The purpose of this study was to assess the prevalence of DTCA of leading pharmaceutical company presence and drug product marketing in online interactive social media technologies (eDTCA 2.0).
Methods
We conducted a descriptive study of the prevalence of eDTCA 2.0 marketing in the top 10 global pharmaceutical corporations and 10 highest grossing drugs of 2009.
Results
All pharmaceutical companies reviewed (10/10, 100%) have a presence in eDTCA 2.0 on Facebook, Twitter/Friendster, sponsored blogs, and really simple syndication (RSS) feeds. In addition, 80% (8/10) have dedicated YouTube channels, and 80% (8/10) developed health care communication-related mobile applications. For reviewed drugs, 90% (9/10) have dedicated websites, 70% (7/10) have dedicated Facebook pages, 90% (9/10) have health communications-related Twitter and Friendster traffic, and 80% (8/10) have DTCA television advertisements on YouTube. We also found 90% (9/10) of these drugs had a non-corporate eDTCA 2.0 marketing presence by illegal online drug sellers.
Conclusion
Pharmaceutical companies use eDTCA 2.0 to market themselves and their top-selling drugs. eDTCA 2.0 is also used by illicit online drug sellers. Regulators worldwide must take into account the current eDTCA 2.0 presence when attempting to reach policy and safety goals.
doi:10.2196/jmir.1775
PMCID: PMC3222189  PMID: 21880574
Illegal pharmacies; social media; pharmaceutical marketing; direct-to-consumer-advertising; internet pharmacies; global health; law; health policy
9.  Harnessing Online Peer Education (HOPE): Integrating C-POL and Social Media to Train Peer Leaders in HIV Prevention 
AIDS Care  2011;24(5):593-600.
Novel methods, such as Internet-based interventions, are needed to combat the spread of HIV. While past initiatives have used the Internet to promote HIV prevention, the growing popularity, decreasing digital divide, and multi-functionality of social networking sites, such as Facebook, make this an ideal time to develop innovative ways to use online social networking sites to scale HIV prevention interventions among high-risk groups. The UCLA HOPE [Harnessing Online Peer Education] study is a longitudinal experimental study to evaluate the feasibility, acceptability, and preliminary effectiveness of using social media for peer-led HIV prevention, specifically among African American and Latino Men who have Sex with Men (MSM). No curriculum currently exists to train peer leaders in delivering culturally aware HIV prevention messages using social media. Training was created that adapted the Community Popular Opinion Leader (C-POL) model, for use on social networking sites. Peer leaders are recruited who represent the target population and have experience with both social media and community outreach. The curriculum contains the following elements: discussion and role playing exercises to integrate basic knowledge of HIV/AIDS, awareness of sociocultural HIV/AIDS issues in the age of technology, and communication methods for training peer leaders in effective, interactive social media-based HIV prevention. Ethical issues related to Facebook and health interventions are integrated throughout the sessions. Training outcomes have been developed for long-term assessment of retention and efficacy. This is the first C-POL curriculum that has been adapted for use on social networking websites. Although this curriculum has been used to target African American and Latino MSM, it has been created to allow generalization to other high-risk groups.
doi:10.1080/09540121.2011.630355
PMCID: PMC3342451  PMID: 22149081
HIV prevention; social networking; facebook; c-pol; popular opinion leader
10.  Disagreements with implications: diverging discourses on the ethics of non-medical use of methylphenidate for performance enhancement 
BMC Medical Ethics  2009;10:9.
Background
There is substantial evidence that methylphenidate (MPH; Ritalin), is being used by healthy university students for non-medical motives such as the improvement of concentration, alertness, and academic performance. The scope and potential consequences of the non-medical use of MPH upon healthcare and society bring about many points of view.
Methods
To gain insight into key ethical and social issues on the non-medical use of MPH, we examined discourses in the print media, bioethics literature, and public health literature.
Results
Our study identified three diverging paradigms with varying perspectives on the nature of performance enhancement. The beneficial effects of MPH on normal cognition were generally portrayed enthusiastically in the print media and bioethics discourses but supported by scant information on associated risks. Overall, we found a variety of perspectives regarding ethical, legal and social issues related to the non-medical use of MPH for performance enhancement and its impact upon social practices and institutions. The exception to this was public health discourse which took a strong stance against the non-medical use of MPH typically viewed as a form of prescription abuse or misuse. Wide-ranging recommendations for prevention of further non-medical use of MPH included legislation and increased public education.
Conclusion
Some positive portrayals of the non-medical use of MPH for performance enhancement in the print media and bioethics discourses could entice further uses. Medicine and society need to prepare for more prevalent non-medical uses of neuropharmaceuticals by fostering better informed public debates.
doi:10.1186/1472-6939-10-9
PMCID: PMC2719652  PMID: 19580661
11.  Use of Social Media by Pharmacy Preceptors 
Objective. To define current use patterns of Facebook and Twitter among pharmacy preceptors and assess perceptions regarding use of social media within professional practice.
Methods. An electronic survey instrument was sent to 315 pharmacists registered as advanced pharmacy practice experience (APPE) preceptors for Purdue University College of Pharmacy.
Results. Approximately 60% of the 155 respondents used a Facebook account and 9% used a Twitter account. Respondents were willing to complete continuing education (CE) credit (46%) using social media, and were interested in following professional organizations (39%) on social media; however, the majority were not interested in obtaining drug or disease-state information, identifying employment opportunities, or participating in clinical discussion forums via social media.
Conclusion. Despite the growing popularity of social media across multiple disciplines, the majority of pharmacy preceptors surveyed were not willing to use these venues in professional practice.
doi:10.5688/ajpe759176
PMCID: PMC3230337  PMID: 22171104
social networking; Facebook; Twitter; technology; advanced pharmacy practice experience
12.  The use of Facebook in medical education – A literature review 
Background: The vogue of social media has changed interpersonal communication as well as learning and teaching opportunities in medical education. The most popular social media tool is Facebook. Its features provide potentially useful support for the education of medical students but it also means that some new challenges will have to be faced.
Aims: This review aimed to find out how Facebook has been integrated into medical education. A systematical review of the current literature and grade of evidence is provided, research gaps are identified, links to prior reviews are drawn and implications for the future are discussed.
Method: The authors searched six databases. Inclusion criteria were defined and the authors independently reviewed the search results. The key information of the articles included was methodically abstracted and coded, synthesized and discussed in the categories study design, study participants’phase of medical education and study content.
Results: 16 articles met all inclusion criteria. 45-96% of health care professionals in all phases of their medical education have a Facebook profile. Most studies focused on Facebook and digital professionalism. Unprofessional behavior and privacy violations occurred in 0.02% to 16%. In terms of learning and teaching environment, Facebook is well accepted by medical students. It is used to prepare for exams, share online material, discuss clinical cases, organize face-to-face sessions and exchange information on clerkships. A few educational materials to teach Facebook professionalism were positively evaluated. There seems to be no conclusive evidence as to whether medical students benefit from Facebook as a learning environment on higher competence levels.
Discussion: Facebook influences a myriad of aspects of health care professionals, particularly at undergraduate and graduate level in medical education. Despite an increasing number of interventions, there is a lack of conclusive evidence in terms of its educational effectiveness. Furthermore, we suggest that digital professionalism be integrated in established and emerging competency-based catalogues.
doi:10.3205/zma000925
PMCID: PMC4152997  PMID: 25228935
Medical Education (MeSH [I02.358.399]); Social Media; Facebook
13.  Methodological and ethical issues in research using social media: a metamethod of Human Papillomavirus vaccine studies 
Background
Online content is a primary source of healthcare information for internet-using adults and a rich resource for health researchers. This paper explores the methodological and ethical issues of engaging in health research using social media.
Methods
A metamethod was performed on systematically selected studies that used social media as a data source for exploring public awareness and beliefs about Human Papillomaviruses (HPV) and HPV vaccination. Seven electronic databases were searched using a variety of search terms identified for each of three concepts: social media, HPV vaccine, and research method. Abstracts were assessed for eligibility of inclusion; six studies met the eligibility criteria and were subjected to content analysis. A 10-item coding scheme was developed to assess the clarity, congruence and transparency of research design, epistemological and methodological underpinnings and ethical considerations.
Results
The designs of the six selected studies were sound, although most studies could have been more transparent about how they built in rigor to ensure the trustworthiness and credibility of findings. Statistical analysis that intended to measure trends and patterns did so without the benefit of randomized sampling and other design elements for ensuring generalizability or reproducibility of findings beyond the specified virtual community. Most researchers did not sufficiently engage virtual users in the research process or consider the risk of privacy incursion. Most studies did not seek ethical approval from an institutional research board or permission from host websites or web service providers.
Conclusions
The metamethod exposed missed opportunities for using the dialogical character of social media as well as a lack of attention to the unique ethical issues inherent in operating in a virtual community where social boundaries and issues of public and private are ambiguous. This suggests the need for more self-conscious and ethical research practices when using social media as a data source. Given the relative newness of virtual communities, researchers and ethics review boards must work together to develop expertise in evaluating the design of studies undertaken with virtual communities. We recommend that the principles of concern for welfare, respect for person, and justice to be applied in research using social media.
doi:10.1186/1471-2288-14-127
PMCID: PMC4265425  PMID: 25468265
Metamethod; Social media; Data collection; HPV vaccination; Ethics; Methodology
14.  How Doctors View and Use Social Media: A National Survey 
Background
Doctors are uncertain of their ethical and legal obligations when communicating with patients online. Professional guidelines for patient-doctor interaction online have been written with limited quantitative data about doctors’ current usage and attitudes toward the medium. Further research into these trends will help to inform more focused policy and guidelines for doctors communicating with patients online.
Objective
The intent of the study was to provide the first national profile of Australian doctors’ attitudes toward and use of online social media.
Methods
The study involved a quantitative, cross-sectional online survey of Australian doctors using a random sample from a large representative database.
Results
Of the 1500 doctors approached, 187 participated (12.47%). Most participants used social media privately, with only one-quarter not using any social media websites at all (48/187, 25.7%). One in five participants (30/155, 19.4%) had received a “friend request” from a patient. There was limited use of online communication in clinical practice: only 30.5% (57/187) had communicated with a patient through email and fewer than half (89/185, 48.1%) could offer their patients electronic forms of information if that were the patients’ preference. Three in five participants (110/181, 60.8%) reported not being uncomfortable about interacting with patients who had accessed personal information about them online, prior to the consultation. Most of the participants (119/181, 65.8%) were hesitant to immerse themselves more fully in social media and online communication due to worries about public access and legal concerns.
Conclusions
Doctors have different practices and views regarding whether or how to communicate appropriately with patients on the Internet, despite online and social media becoming an increasingly common feature of clinical practice. Additional training would assist doctors in protecting their personal information online, integrating online communication in patient care, and guidance on the best approach in ethically difficult online situations.
doi:10.2196/jmir.3589
PMCID: PMC4275505  PMID: 25470407
social media; Internet; professional practice; health communication; ethics; health policy; patient-physician relations
15.  Adoption and use of social media among public health departments 
BMC Public Health  2012;12:242.
Background
Effective communication is a critical function within any public health system. Social media has enhanced communication between individuals and organizations and has the potential to augment public health communication. However, there is a lack of reported data on social media adoption within public health settings. The purposes of this study were to assess: 1) the extent to which state public health departments (SHDs) are using social media; 2) which social media applications are used most often; and 3) how often social media is used interactively to engage audiences.
Methods
This was a non-experimental, cross sectional study of SHD social media sites. Screen capture software Snag-It® was used to obtain screenshots of SHD social media sites across five applications. These sites were coded for social media presence, interactivity, reach, and topic.
Results
Sixty percent of SHDs reported using at least one social media application. Of these, 86.7% had a Twitter account, 56% a Facebook account, and 43% a YouTube channel. There was a statistically significant difference between average population density and use of social media (p = .01). On average, SHDs made one post per day on social media sites, and this was primarily to distribute information; there was very little interaction with audiences. SHDs have few followers or friends on their social media sites. The most common topics for posts and tweets related to staying healthy and diseases and conditions. Limitations include the absence of a standard by which social media metrics measure presence, reach, or interactivity; SHDs were only included if they had an institutionally maintained account; and the study was cross sectional.
Conclusions
Social media use by public health agencies is in the early adoption stage. However, the reach of social media is limited. SHDs are using social media as a channel to distribute information rather than capitalizing on the interactivity available to create conversations and engage with the audience. If public health agencies are to effectively use social media then they must develop a strategic communication plan that incorporates best practices for expanding reach and fostering interactivity and engagement.
doi:10.1186/1471-2458-12-242
PMCID: PMC3331826  PMID: 22449137
16.  Where are you going, where have you been: a recent history of the direct-to-consumer genetic testing market 
Journal of Community Genetics  2010;1(3):101-106.
In recent years, various private companies have been marketing and offering genetic tests directly to consumers. This article reviews the recent history of this commercial phenomenon. In particular, we discuss and describe the following subjects: (1) the factors that allowed for the creation of the direct-to-consumer (DTC) genetic testing (GT) market; (2) information regarding the size and potential success or failure of the DTC GT market; (3) recent changes in the DTC GT market; and (4) the recent events that may have an impact on the regulatory oversight of DTC genetic testing and the future evolution of this market. This review of factors suggests that despite the possibility of a change of business model as well as increased regulation, the commercialization of genetic testing is here to stay. As such it is important to pay close attention not only to the science underlying these tests but also to the ethical, legal, and social issues.
doi:10.1007/s12687-010-0023-z
PMCID: PMC3063844  PMID: 21475669
17.  Where are you going, where have you been: a recent history of the direct-to-consumer genetic testing market 
Journal of community genetics  2010;1(3):101-106.
In recent years, various private companies have been marketing and offering genetic tests directly to consumers. This article reviews the recent history of this commercial phenomenon. In particular, we discuss and describe the following subjects: (1) the factors that allowed for the creation of the direct-to-consumer (DTC) genetic testing (GT) market; (2) information regarding the size and potential success or failure of the DTC GT market; (3) recent changes in the DTC GT market; and (4) the recent events that may have an impact on the regulatory oversight of DTC genetic testing and the future evolution of this market. This review of factors suggests that despite the possibility of a change of business model as well as increased regulation, the commercialization of genetic testing is here to stay. As such it is important to pay close attention not only to the science underlying these tests but also to the ethical, legal, and social issues.
doi:10.1007/s12687-010-0023-z
PMCID: PMC3063844  PMID: 21475669
18.  The Use of Social Media by State Tobacco Control Programs to Promote Smoking Cessation: A Cross-Sectional Study 
Background
The promotion of evidence-based cessation services through social media sites may increase their utilization by smokers. Data on social media adoption and use within tobacco control programs (TCPs) have not been reported.
Objective
This study examines TCP use of and activity levels on social media, the reach of TCP sites, and the level of engagement with the content on sites.
Methods
A cross-sectional descriptive study of state TCP social media sites and their content was conducted.
Results
In 2013, 60% (30/50) of TCPs were using social media. Approximately one-quarter (26%, 13/50) of all TCPs used 3 or more social media sites, 24% (12/50) used 2, and 10% (5/50) used 1 site. Overall, 60% (30/50) had a Facebook page, 36% (18/50) had a Twitter page, and 40% (20/50) had a YouTube channel. The reach of social media was different across each site and varied widely by state. Among TCPs with a Facebook page, 73% (22/30) had less than 100 likes per 100,000 adults in the state, and 13% (4/30) had more than 400 likes per 100,000 adults. Among TCPs with a Twitter page, 61% (11/18) had less than 10 followers per 100,000 adults, and just 1 state had more than 100 followers per 100,000 adults. Seven states (23%, 7/30) updated their social media sites daily. The most frequent social media activities focused on the dissemination of information rather than interaction with site users. Social media resources from a national cessation media campaign were promoted infrequently.
Conclusions
The current reach of state TCP social media sites is low and most TCPs are not promoting existing cessation services or capitalizing on social media’s interactive potential. TCPs should create an online environment that increases participation and 2-way communication with smokers to promote free cessation services.
doi:10.2196/jmir.3430
PMCID: PMC4115651  PMID: 25014311
social media; tobacco; smoking; public health; mass media
19.  "Harnessing genomics to improve health in India" – an executive course to support genomics policy 
Background
The benefits of scientific medicine have eluded millions in developing countries and the genomics revolution threatens to increase health inequities between North and South. India, as a developing yet also industrialized country, is uniquely positioned to pioneer science policy innovations to narrow the genomics divide. Recognizing this, the Indian Council of Medical Research and the University of Toronto Joint Centre for Bioethics conducted a Genomics Policy Executive Course in January 2003 in Kerala, India. The course provided a forum for stakeholders to discuss the relevance of genomics for health in India. This article presents the course findings and recommendations formulated by the participants for genomics policy in India.
Methods
The course goals were to familiarize participants with the implications of genomics for health in India; analyze and debate policy and ethical issues; and develop a multi-sectoral opinion leaders' network to share perspectives. To achieve these goals, the course brought together representatives of academic research centres, biotechnology companies, regulatory bodies, media, voluntary, and legal organizations to engage in discussion. Topics included scientific advances in genomics, followed by innovations in business models, public sector perspectives, ethics, legal issues and national innovation systems.
Results
Seven main recommendations emerged: increase funding for healthcare research with appropriate emphasis on genomics; leverage India's assets such as traditional knowledge and genomic diversity in consultation with knowledge-holders; prioritize strategic entry points for India; improve industry-academic interface with appropriate incentives to improve public health and the nation's wealth; develop independent, accountable, transparent regulatory systems to ensure that ethical, legal and social issues are addressed for a single entry, smart and effective system; engage the public and ensure broad-based input into policy setting; ensure equitable access of poor to genomics products and services; deliver knowledge, products and services for public health. A key outcome of the course was the internet-based opinion leaders' network – the Indian Genome Policy Forum – a multi-stakeholder forum to foster further discussion on policy.
Conclusion
We expect that the process that has led to this network will serve as a model to establish similar Science and Technology policy networks on regional levels and eventually on a global level.
doi:10.1186/1478-4505-2-1
PMCID: PMC434533  PMID: 15151698
20.  Framing the Use of Social Media Tools in Public Health 
Objective
Recent scholarship has focused on using social media (e.g., Twitter, Facebook) as a secondary data stream for disease event detection. However, reported implementations such as (4) underscore where the real value may lie in using social media for surveillance. We provide a framework to illuminate uses of social media beyond passive observation, and towards improving active responses to public health threats.
Introduction
User-generated content enabled by social media tools provide a stream of data that augment surveillance data. Current use of social media data focuses on identification of disease events. However, once identification occurs, the leveraging of social media in monitoring disease events remains unclear (2, 3). To clarify this, we constructed a framework mapped to the surveillance cycle, to understand how social media can improve public health actions.
Methods
This framework builds on extant literature on surveillance and social media found in PubMed, Science Direct, and Web of Science, using keywords: “public health”, “surveillance”, “outbreak”, and “social media”. We excluded articles on online tools that were not interactive e.g., aggregated web-search results. Of 2,064 articles, 23 articles were specifically on the use of social media in surveillance work. Our review yielded five categories of social media use within the surveillance cycle (Table 1). This framing within surveillance illuminates a range of roles for social media tools beyond disease event detection. [Insert Image #1 here]
Finally, we used the 1918 Influenza Pandemic to illustrate an application of this framework (Fig 1), if it were part of the public health toolkit. In 1918, America was already becoming a “mass media” society. Yet a key difference in mass communications today is the enabling of public health to be more adaptive through the interactivity of social media.
Results
We used this “pre-social media” disease event to underscore where the real value of social media may lie in the surveillance cycle. Thus for 1918, early detection of disease could have occurred with many, e.g., sailors aboard ships in New York City’s port sharing their “status updates” with the world. [Insert Image #2 here]
After detection, social media use could have shifted to help connect and inform. In 1918, this could include identifying and advising the infected on current hygiene practices and how to protect themselves. Social media would have enabled the rapid sharing of this information to friends and family, allowing public health officials to monitor the response. Then, to support multiple intervention efforts, public health officials could have rapidly messaged on local school closures; they could also have encouraged peer behavior by posting via Twitter or by “Pinning” handkerchiefs on Pinterest to encourage respiratory etiquette, and then monitored responses to these interventions, adjusting messaging accordingly.
Conclusions
The interactivity of social media moves us beyond using these tools solely as uni-directional, mass-broadcast channels. Beyond messaging about disease events, these tools can simultaneously help inform, connect, and intervene because of the user-generated feedback. These tools enable richer use beyond a noisy data stream for detection.
PMCID: PMC3692914
Surveillance; Public Health; Social Media
21.  Theory and practice of informed consent in the Czech Republic 
Journal of Medical Ethics  2007;33(5):273-277.
The large‐scale change of Czech society since 1989 has involved the democratic transformation of the health system. To empower the patient was one important goal of the healthcare reform launched immediately after the Velvet Revolution. The process has been enhanced by the accession of the Czech Republic to the European Union and the adoption of important European conventions regulating the area. The concept of informed consent and a culture of negotiation are being inserted into a traditionally paternalistic culture. Our article describes the current situation on the issue of the communication of information on state of health and treatment, and on the question of the participation of the patient in decisions on treatment. We present empirical results of a public opinion survey on this issue. The results show a still prevailing submissive attitude towards the physicians, despite the fact that the concept of informed consent has become more and more publicly familiar (42% of respondents gave the completely correct answer regarding informed consent). The impact of age, education and sex on answers to the questionnaire was analysed. Men, younger and more educated respondents were more likely to show the autonomous attitude, whereas women, older and less educated people tended to show the traditional submissive attitude. Further, our article raises the question of the cultural and historical background within which the current ethically and legally binding norms (products of western democracies, in fact) are interpreted. The question is how far cultural modifications are tolerable in the practical implementation of universal ethical constructs (informed consent).
doi:10.1136/jme.2005.015164
PMCID: PMC2598120  PMID: 17470503
22.  Evaluation of clinical trials by Ethics Committees in Germany - Experience of applicants with the review of requests for opinion of the Ethics Committees - results of a survey among members of the German Association of Research-Based Pharmaceutical Companies (VFA) 
The review of requests for a positive opinion of the ethics committees (application procedure) as a requirement to start a clinical trial in Germany has been completely redesigned with the transposition of EU Directive 2001/20/EC in the 12th Amendment of the German Medicines Act in August 2004. The experience of applicants (sponsors, legal representatives of sponsors in the EU and persons or organizations authorized by the sponsors to make the application, respectively) in terms of interactions with the ethics committees in Germany has been positive overall, especially with respect to ethics committee adherence to the statutory timelines applicable for review of requests. However, inconsistencies between ethics committees exist in terms of the form and content of the requirements for application documents and their evaluation.
With the objective of further improving both the quality of applications and the evaluation of those applications by ethics committees, a survey among members of the German Association of Research-Based Pharmaceutical Companies (VFA) was conducted from January to April 2008. Based on reasoned opinions issued by the respective ethics committee in charge of the coordinating principal investigator (coordinating ethics committee), the type and frequency of formal and content-related objections to applications according to § 7 of the German Good Clinical Practice (GCP) Regulation were systematically documented, and qualitative and quantitative analyses performed. 21 out of 44 members of the VFA participated in the survey. 288 applications for Phase I–IV studies submitted between January and December 2007 to 40 ethics committees were evaluated.
This survey shows that about one in six applications is incomplete and has formal and/or content objections, respectively, especially those that pertain to documents demonstrating the qualification of the investigator and/or suitability of the facilities. These objections are attributable to some extent to the differing and/or unclear requirements of the individual ethics committees on the content and comprehension of the submission documents. However, applicants also need to pay more attention to the completeness and validity of the submission documents. The majority of content-related objections apply to the patient information and consent documents and study protocols submitted. Applicants on average acted upon only 3 out of 4 objections, for various reasons: the relevant information was already given in the submitted documents, but had not been taken into consideration by the ethics committees; objections were not applicable; objections lacked a legal basis. In such cases the applicants made reference to the specific information already submitted or gave reasons for not acting on the objection. This course of action was accepted by the ethics committees, with few exceptions. The survey sheds light on the existing inconsistencies in the evaluations of applications by the various ethics committees and suggests ways in which the existing constructive dialogue between applicants and ethics committees may provide a basis to further harmonize both the requirements regarding form and content of application documents, and the criteria for evaluation of applications by ethics committees within the legal framework.
doi:10.3205/000066
PMCID: PMC2716553  PMID: 19675747
ethics committees; application procedure; formal and content-related objections; clinical trials
23.  Legal aspects with regard to integrated care: a long way to go 
Introduction
The main purpose of this abstract is to raise awareness of the unsatisfactory legal situation with regard to integrated care. The abstract focuses on two major legal issues. First, I picture the actual legal situation regarding cross-border healthcare. Secondly, I describe the duties care providers and patients may face when entering into integrated care programs.
Cross-border healthcare
Currently, we lack an European legislative framework that regulates cross-border healthcare. One reason for this fact is that Article 152 EC treaty states that “Community Action in the field of public health shall fully respect the responsibilities of the Member States for the organisation and delivery of health services and medical care” [1]. Therefore, it's up to each Member State to provide regulations with regard to cross-border healthcare services. Hence, patients need to deal with various national—often inconsistent—provisions when considering consuming cross-border healthcare. As a consequence, patients easily felt overstrained and the unclear legal situation prevents them from crossing a border to obtain healthcare. This often averts the establishment of integrated care models. As a result, patients lose the opportunity to receive more or different healthcare services and products in Member States other than the State in which they are living or are insured.
Nevertheless, it was the European Court of Justice (ECJ) with its continuous rulings in respect to cross-border healthcare that started with the harmonization process of cross-border healthcare legislation. The ECJ judges have ruled that freedom to cross EU borders for the best and quickest treatment is a right for all [2]. However, litigation before the ECJ suffers from deficiencies in this respect. In particular, the case law of the ECJ on the issue clearly shows the unsatisfactory nature of case-by-case ex post procedures for a complex and developing policy area. Further, litigation always leads to a winner and a loser, but does not foster an iterative, deliberate process in which the optimal accommodation of all affected interests is reached because the ECJ always decides on a particular case [3]. As a consequence, the European Commission has presented a proposal for a directive on the application of patient's rights in cross-border healthcare which reflects the decisions of the ECJ [4]. The aim of the proposed directive is—expressed in simplified terms—to ensure and to clarify the conditions for exercising patient's right to cross-border healthcare, and to create a framework for increasing cooperation between Member States. The proposal directive covers cross-border healthcare irrespective of how it is organised, financed or provided and whether it is private or public. The outcome of the proposed directive would be the reduction of obstacles faced when crossing the border in order to obtain healthcare. In case the proposed directive will be approved and will come into force, a major step in order to enlarge the possibilities to achieve integrated care is done. However, the Member States (e.g. Austria) take a critical stance towards the proposed directive and no one currently knows whether it will ever be approved [5].
The actor's duties with respect to integrated care programs
Entering into an integrated care program leads to legal challenges with regard to the actors. In particular, the question which duties are faced when entering into an integrated care program has not been raised yet. Therefore, patients find themselves in situations with a deficit of information and do not see the legal consequences when entering into an integrated care program. Patients often do not realise that they conclude an agreement with a health insurance company. They bind themselves for a certain period (sometimes several years) and they are contractually not allowed to rescind from the agreement. In general, integrated care programs offered from health insurance companies oblige the patient to consult the healthcare providers that are covered from the agreement. As a consequence, in case patients are not satisfied with the healthcare provider because of medical or personal reasons, no change to another healthcare provider is possible. Further, patients always enter into an implied health treatment agreement with the healthcare provider. In turn, healthcare providers do not have any certainties to be appointed from health insurance companies and, therefore, may lose essential revenues. In addition, healthcare providers are obliged to fulfil certain requirements (technical and organisational) in order to be appointed. In case they are not able anymore to continuously fulfil these requirements, health insurance companies may rescind their contracts. Having these issues in mind, one can assume that entering into an integrated care program implies various—often unseen—duties from different perspectives.
Conclusion
At a glance, the legal background of integrated care still raises a lot of unsolved problems both on a national and on a European level. As a next step, legal uncertainties should be made transparent in order to give the actors the possibility to discuss them. A consequence of this public discussion would be a cornerstone for more consumer-friendly healthcare models that would lead to better patient treatment and would enhance integrated healthcare.
PMCID: PMC2807115
cross-border healthcare; legislation; European Court of Justice; patient's rights; legal duties; integrated care program
24.  Ethical Issues in Using Twitter for Public Health Surveillance and Research: Developing a Taxonomy of Ethical Concepts From the Research Literature 
Background
The rise of social media and microblogging platforms in recent years, in conjunction with the development of techniques for the processing and analysis of “big data”, has provided significant opportunities for public health surveillance using user-generated content. However, relatively little attention has been focused on developing ethically appropriate approaches to working with these new data sources.
Objective
Based on a review of the literature, this study seeks to develop a taxonomy of public health surveillance-related ethical concepts that emerge when using Twitter data, with a view to: (1) explicitly identifying a set of potential ethical issues and concerns that may arise when researchers work with Twitter data, and (2) providing a starting point for the formation of a set of best practices for public health surveillance through the development of an empirically derived taxonomy of ethical concepts.
Methods
We searched Medline, Compendex, PsycINFO, and the Philosopher’s Index using a set of keywords selected to identify Twitter-related research papers that reference ethical concepts. Our initial set of queries identified 342 references across the four bibliographic databases. We screened titles and abstracts of these references using our inclusion/exclusion criteria, eliminating duplicates and unavailable papers, until 49 references remained. We then read the full text of these 49 articles and discarded 36, resulting in a final inclusion set of 13 articles. Ethical concepts were then identified in each of these 13 articles. Finally, based on a close reading of the text, a taxonomy of ethical concepts was constructed based on ethical concepts discovered in the papers.
Results
From these 13 articles, we iteratively generated a taxonomy of ethical concepts consisting of 10 top level categories: privacy, informed consent, ethical theory, institutional review board (IRB)/regulation, traditional research vs Twitter research, geographical information, researcher lurking, economic value of personal information, medical exceptionalism, and benefit of identifying socially harmful medical conditions.
Conclusions
In summary, based on a review of the literature, we present a provisional taxonomy of public health surveillance-related ethical concepts that emerge when using Twitter data.
doi:10.2196/jmir.3617
PMCID: PMC4285736  PMID: 25533619
social media; twitter messaging; ethics
25.  Communicating Genetics and Smoking Through Social Media: Are We There Yet? 
Background
Social media is a recent source of health information that could disseminate new scientific research, such as the genetics of smoking.
Objective
The objectives were (1) to evaluate the availability of genetic information about smoking on different social media platforms (ie, YouTube, Facebook, and Twitter) and (2) to assess the type and the content of the information displayed on the social media as well as the profile of people publishing this information.
Methods
We screened posts on YouTube, Facebook, and Twitter with the terms “smoking” and “genetic” at two time points (September 18, 2012, and May 7, 2013). The first 100 posts were reviewed for each media for the time points. Google was searched during Time 2 as an indicator of available information on the Web and the other social media that discussed genetics and smoking. The source of information, the country of the publisher, characteristics of the posts, and content of the posts were extracted.
Results
On YouTube, Facebook, and Twitter, 31, 0, and 84 posts, respectively, were included. Posts were mostly based on smoking-related diseases, referred to scientific publications, and were largely from the United States. From the Google search, most results were scientific databases. Six scientific publications referred to within the Google search were also retrieved on either YouTube or Twitter.
Conclusions
Despite the importance of public understanding of smoking and genetics, and the high use of social media, little information on this topic is actually present on social media. Therefore, there is a need to monitor the information that is there and to evaluate the population’s understanding of the information related to genetics and smoking that is displayed on social media.
doi:10.2196/jmir.2653
PMCID: PMC3785980  PMID: 24018012
genetics; Internet; public health genomics; smoking; social media; Web 2.0

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