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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.  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
3.  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
4.  Ethical and legal issues in research involving human subjects: do you want a piece of me? 
Journal of Clinical Pathology  2006;59(4):335-339.
The conduct of biomedical research involving the participation of human beings implicates a variety of ethical concerns pertaining to such values as dignity, bodily integrity, autonomy, and privacy. These ethical concerns have been translated into a complex regulatory apparatus in the USA, containing specific legal provisions concerning such matters as participant safety, informed consent, and confidentiality. A topic of particular interest for pathologists is the handling of human tissue specimens that may be used for present, or stored for future, research purposes. This article examines the ethical and legal ramifications of obtaining and storing tissue samples for research purposes, with special attention to the issues of informed consent and confidentiality.
doi:10.1136/jcp.2005.030957
PMCID: PMC1860367  PMID: 16567467
ethics; law; research; tissue
5.  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
6.  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
7.  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
8.  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
9.  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
10.  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
11.  Protected Health Information on Social Networking Sites: Ethical and Legal Considerations 
Background
Social networking site use is increasingly common among emerging medical professionals, with medical schools even reporting disciplinary student expulsion. Medical professionals who use social networking sites have unique responsibilities since their postings could violate patient privacy. However, it is unknown whether students and residents portray protected health information and under what circumstances or contexts.
Objective
The objective of our study was to document and describe online portrayals of potential patient privacy violations in the Facebook profiles of medical students and residents.
Methods
A multidisciplinary team performed two cross-sectional analyses at the University of Florida in 2007 and 2009 of all medical students and residents to see who had Facebook profiles. For each identified profile, we manually scanned the entire profile for any textual or photographic representations of protected health information, such as portrayals of people, names, dates, or descriptions of procedures.
Results
Almost half of all eligible students and residents had Facebook profiles (49.8%, or n=1023 out of 2053). There were 12 instances of potential patient violations, in which students and residents posted photographs of care they provided to individuals. No resident or student posted any identifiable patient information or likeness in text form. Each instance occurred in developing countries on apparent medical mission trips. These portrayals increased over time (1 in the 2007 cohort; 11 in 2009; P = .03). Medical students were more likely to have these potential violations on their profiles than residents (11 vs 1, P = .04), and there was no difference by gender. Photographs included trainees interacting with identifiable patients, all children, or performing medical examinations or procedures such as vaccinations of children.
Conclusions
While students and residents in this study are posting photographs that are potentially violations of patient privacy, they only seem to make this lapse in the setting of medical mission trips. Trainees need to learn to equate standards of patient privacy in all medical contexts using both legal and ethical arguments to maintain the highest professional principles. We propose three practical guidelines. First, there should be a legal resource for physicians traveling on medical mission trips such as an online list of local laws, or a telephone legal contact. Second, institutions that organize medical mission trips should plan an ethics seminar prior the departure on any trip since the legal and ethical implications may not be intuitive. Finally, at minimum, traveling physicians should apply the strictest legal precedent to any situation.
doi:10.2196/jmir.1590
PMCID: PMC3221358  PMID: 21247862
Protected health information, medical missions, Internet
12.  Ethical, Legal, and Social Issues in Health Technology Assessment for Prenatal/Preconceptional and Newborn Screening: A Workshop Report 
Public health genomics  2008;12(1):4-10.
Prenatal/preconceptional and newborn screening programs have been a focus of recent policy debates that have included attention to ethical, legal, and social issues (ELSIs). In parallel, there has been an ongoing discussion about whether and how ELSIs may be addressed in health technology assessment (HTA). We conducted a knowledge synthesis study to explore both guidance and current practice regarding the consideration of ELSIs in HTA for prenatal/preconceptional and newborn screening. As the concluding activity for this project, we held a Canadian workshop to discuss the issues with a diverse group of stakeholders. Based on key workshop themes integrated with our study results, we suggest that population-based genetic screening programs may present particular types of ELSIs and that a public health ethics perspective is potentially highly relevant when considering them. We also suggest that approaches to addressing ELSIs in HTA for prenatal/preconceptional and newborn screening may need to be flexible enough to respond to diversity in HTA organizations, cultural values, stakeholder communities, and contextual factors. Finally, we highlight a need for transparency in the way that HTA producers move from evidence to conclusions and the ways in which screening policy decisions are made.
doi:10.1159/000153430
PMCID: PMC2790790  PMID: 19023190
Ethical, legal, and social issues (ELSIs); Genetic screening; Health technology assessment; Neonatal screening; Prenatal screening; Public health ethics
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.  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
15.  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
16.  Ethical, social, and legal issues surrounding studies of susceptible populations and individuals. 
Environmental Health Perspectives  1997;105(Suppl 4):837-841.
Calls for professional accountability have resulted in the development of ethics guidelines by numerous specialty and subspecialty groups of scientists. Indeed, guidelines among some health professions now address vulnerable and dependent groups: but these are silent on issues related to biomarkers. In parallel, attention has been drawn to human rights concerns associated with attempts to detect hypersusceptible workers, especially in democratic countries. Despite this, concern for vulnerable populations grows as advances in biomarker technology make the identification of genetic predisposition and susceptibility markers of both exposure and outcome more attainable. In this article, the principles derived from the ethical theory of utilitarianism provide the basis for principle-based ethical analysis. In addition, the four principles of biomedical ethics--respect for autonomy, beneficence, nonmaleficence, and social justice--are considered for biomarker studies. The need for a context in which ethical analysis is conducted and from which prevailing social values are shown to drive decisions of an ethical nature is emphasized; these include statutory regulation and law. Because biomarker studies can result in more harm than good, special precautions to inform research participants prior to any involvement in the use of biomarkers are needed. In addition, safeguards to maintain the privacy of data derived from biomarker studies must be developed and implemented prior to the application of these new technologies. Guidelines must be expanded to incorporate ethical, social, and legal considerations surrounding the introduction of new technologies for studying susceptible populations and individuals who may be vulnerable to environmental exposures.
PMCID: PMC1470036  PMID: 9255569
17.  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
18.  Legal and ethical considerations in processing patient‐identifiable data without patient consent: lessons learnt from developing a disease register 
Journal of Medical Ethics  2007;33(5):302-307.
The legal requirements and justifications for collecting patient‐identifiable data without patient consent were examined. The impetus for this arose from legal and ethical issues raised during the development of a population‐based disease register. Numerous commentaries and case studies have been discussing the impact of the Data Protection Act 1998 (DPA1998) and Caldicott principles of good practice on the uses of personal data. But uncertainty still remains about the legal requirements for processing patient‐identifiable data without patient consent for research purposes. This is largely owing to ignorance, or misunderstandings of the implications of the common law duty of confidentiality and section 60 of the Health and Social Care Act 2001. The common law duty of confidentiality states that patient‐identifiable data should not be provided to third parties, regardless of compliance with the DPA1998. It is an obligation derived from case law, and is open to interpretation. Compliance with section 60 ensures that collection of patient‐identifiable data without patient consent is lawful despite the duty of confidentiality. Fears regarding the duty of confidentiality have resulted in a common misconception that section 60 must be complied with. Although this is not the case, section 60 support does provide the most secure basis in law for collecting such data. Using our own experience in developing a disease register as a backdrop, this article will clarify the procedures, risks and potential costs of applying for section 60 support.
doi:10.1136/jme.2006.016907
PMCID: PMC2598125  PMID: 17470509
19.  Ethical, Legal, and Social Dimensions of Epilepsy Genetics 
Epilepsia  2006;47(10):1595-1602.
Summary
Purpose
Emerging genetic information and the availability of genetic testing has the potential to increase understanding of the disease and improve clinical management of some types of epilepsy. However, genetic testing is also likely to raise significant ethical, legal, and social issues for people with epilepsy, their family members, and their health care providers. We review the genetic and social dimensions of epilepsy relevant to understanding the complex questions raised by epilepsy genetics.
Methods
We reviewed two literatures: (a) research on the genetics of epilepsy, and (b) social science research on the social experience and social consequences of epilepsy. For each, we note key empiric findings and discuss their implications with regard to the consequences of emerging genetic information about epilepsy. We also briefly review available principles and guidelines from professional and advocacy groups that might help to direct efforts to ascertain and address the ethical, legal, and social dimensions of genetic testing for epilepsy.
Results
Genetic information about epilepsy may pose significant challenges for people with epilepsy and their family members. Although some general resources are available for navigating this complex new terrain, no guidelines specific to epilepsy have yet been developed to assist people with epilepsy, their family members, or their health care providers.
Conclusions
Research is needed on the ethical, legal, and social concerns raised by genetic research on epilepsy and the advent of genetic testing. This research should include the perspectives of people with epilepsy and their family members, as well as those of health care professionals, policymakers, and bioethicists.
doi:10.1111/j.1528-1167.2006.00632.x
PMCID: PMC1802101  PMID: 17054679
Epilepsy; Genetics; Genetic testing; Stigma; Discrimination
20.  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
21.  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
22.  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
23.  Exposure of Children and Adolescents to Alcohol Marketing on Social Media Websites 
Aims: In 2011, online marketing became the largest marketing channel in the UK, overtaking television for the first time. This study aimed to describe the exposure of children and young adults to alcohol marketing on social media websites in the UK. Methods: We used commercially available data on the three most used social media websites among young people in the UK, from December 2010 to May 2011. We analysed by age (6–14 years; 15–24 years) and gender the reach (proportion of internet users who used the site in each month) and impressions (number of individual pages viewed on the site in each month) for Facebook, YouTube and Twitter. We further analysed case studies of five alcohol brands to assess the marketer-generated brand content available on Facebook, YouTube and Twitter in February and March 2012. Results: Facebook was the social media site with the highest reach, with an average monthly reach of 89% of males and 91% of females aged 15–24. YouTube had a similar average monthly reach while Twitter had a considerably lower usage in the age groups studied. All five of the alcohol brands studied maintained a Facebook page, Twitter page and YouTube channel, with varying levels of user engagement. Facebook pages could not be accessed by an under-18 user, but in most cases YouTube content and Twitter content could be accessed by those of all ages. Conclusion: The rise in online marketing of alcohol and the high use of social media websites by young people suggests that this is an area requiring further monitoring and regulation.
doi:10.1093/alcalc/agt174
PMCID: PMC3932831  PMID: 24293506
24.  Organ Transplantation: Legal, Ethical and Islamic Perspective in Nigeria 
Organ transplantation dates back to the ancient times and since then it has become one of the important developments in modern medicine; saving the lives, as well as improving the quality of life of many patients. As the demand for organ transplantation far exceeds the organ availability, the transplant program is often saddled with complex legal and ethical issues. This review article highlights the legal and ethical issues that might arise regarding organ transplantation and appraises the existing legal frame work governing organ transplantation in Nigeria. Information on legal, cultural, religious and medical ethical issues regarding organ transplantation in Nigeria was obtained by searching the PubMed and Google Scholar, conference proceedings, seminar paper presentations, law library and other related publications were collated and analyzed. In decision making for organ transplantation, the bioethical principles like autonomy, beneficence and justice must be employed. It was believed by Catholic theologians that to mutilate one living person to benefit another violates the principle of Totality. Among Muslim scholars and researchers, there are those who throw legal support as to its permissibility while the other group sees it as illegal. Organ/tissues transplantation is considered a medical intervention that touches on the fundamental rights of the donor or the recipient. Where there is an unlawful infringement of the right of such persons in any way may be regarded as against Section 34 of the 1999 Nigerian Constitution dealing with right to dignity of the human person. Worldwide, the researchers and government bodies have agreed on informed consent for organ/tissue donation and for recipient should be obtained without coercion before embarking on such medical treatment Worldwide organ transplantation has become the best medical treatment for patients with end stage organ failure. However, there is no law/legislation backing organ/tissues transplantation in Nigeria. The government should take measures to combat transplantation tourism and the problem of national and international trafficking in human tissues and organs, ethics commission and National Transplant registry should be established in order to monitor and regulate the programme in the country.
doi:10.4103/1117-6806.103103
PMCID: PMC3762001  PMID: 24027394
Ethical; Islamic perspective; legal; Nigeria; organ transplantation
25.  Action in the Event Tent! Medical-Legal Issues Facing the Volunteer Event Physician 
Sports Health  2013;5(4):340-345.
Context:
Physicians need to consider medical-legal issues when volunteering their time to assist with community mass-participation and athletic events. This article also reviews medical-legal aspects of the volunteer physician’s out-of-state practice. Seven cases illustrate the importance of expertise and planning to avoid legal issues for the volunteer event physician.
Evidence Acquisition:
Relevant studies, expert opinion, medical-legal legislation, and medical-legal cases were reviewed.
Results:
Physicians typically make 4 common assumptions regarding these types of events: Good Samaritan legislation, event liability insurance, personal liability insurance, and waivers. We discuss the intent of these assumptions and the reality of how, or how not, they provide any protection to the volunteer event physician.
Conclusion:
The intent of this article is to make physicians aware of medial-legal issues when volunteering their time for community and athletic events.
doi:10.1177/1941738112474226
PMCID: PMC3899900  PMID: 24459551
volunteer event physician; Good Samaritan legislation; legal liability; waiver

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