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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.  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
4.  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
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.  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
7.  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
8.  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
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.  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
11.  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
12.  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
13.  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
14.  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
15.  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
16.  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
17.  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
18.  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
19.  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
20.  Implementing risk-stratified screening for common cancers: a review of potential ethical, legal and social issues 
Background
The identification of common genetic variants associated with common cancers including breast, prostate and ovarian cancers would allow population stratification by genotype to effectively target screening and treatment. As scientific, clinical and economic evidence mounts there will be increasing pressure for risk-stratified screening programmes to be implemented.
Methods
This paper reviews some of the main ethical, legal and social issues (ELSI) raised by the introduction of genotyping into risk-stratified screening programmes, in terms of Beauchamp and Childress's four principles of biomedical ethics—respect for autonomy, non-maleficence, beneficence and justice. Two alternative approaches to data collection, storage, communication and consent are used to exemplify the ELSI issues that are likely to be raised.
Results
Ultimately, the provision of risk-stratified screening using genotyping raises fundamental questions about respective roles of individuals, healthcare providers and the state in organizing or mandating such programmes, and the principles, which underpin their provision, particularly the requirement for distributive justice.
Conclusions
The scope and breadth of these issues suggest that ELSI relating to risk-stratified screening will become increasingly important for policy-makers, healthcare professionals and a wide diversity of stakeholders.
doi:10.1093/pubmed/fdt078
PMCID: PMC4041100  PMID: 23986542
cancer; consent; distributive justice; personalized screening; risk-stratified screening
21.  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
22.  Medico-Legal Findings, Legal Case Progression, and Outcomes in South African Rape Cases: Retrospective Review 
PLoS Medicine  2009;6(10):e1000164.
Rachel Jewkes and colleagues examine the processing of rape cases by South African police and courts and show an association between documentation of ano-genital injuries, trials commencing, and convictions in rape cases.
Background
Health services for victims of rape are recognised as a particularly neglected area of the health sector internationally. Efforts to strengthen these services need to be guided by clinical research. Expert medical evidence is widely used in rape cases, but its contribution to the progress of legal cases is unclear. Only three studies have found an association between documented bodily injuries and convictions in rape cases. This article aims to describe the processing of rape cases by South African police and courts, and the association between documented injuries and DNA and case progression through the criminal justice system.
Methods and Findings
We analysed a provincially representative sample of 2,068 attempted and completed rape cases reported to 70 randomly selected Gauteng province police stations in 2003. Data sheets were completed from the police dockets and available medical examination forms were copied. 1,547 cases of rape had medical examinations and available forms and were analysed, which was at least 85% of the proportion of the sample having a medical examination. We present logistic regression models of the association between whether a trial started and whether the accused was found guilty and the medico-legal findings for adult and child rapes. Half the suspects were arrested (n = 771), 14% (209) of cases went to trial, and in 3% (31) of adults and 7% (44) of children there was a conviction. A report on DNA was available in 1.4% (22) of cases, but the presence or absence of injuries were documented in all cases. Documented injuries were not associated with arrest, but they were associated with children's cases (but not adult's) going to trial (adjusted odds ratio [AOR] for having genital and nongenital injuries 5.83, 95% confidence interval [CI] 1.87–18.13, p = 0.003). In adult cases a conviction was more likely if there were documented injuries, whether nongenital injuries alone AOR 6.25 (95% CI 1.14–34.3, p = 0.036), ano-genital injuries alone (AOR 7.00, 95% CI 1.44–33.9, p = 0.017), or both nongenital and ano-genital injuries (AOR 12.34, 95% CI 2.87–53.0, p = 0.001). DNA was not associated with case outcome.
Conclusions
This is the first study, to our knowledge, to show an association between documentation of ano-genital injuries, trials commencing, and convictions in rape cases in a developing country. Its findings are of particular importance because they show the value of good basic medical practices in documentation of injuries, rather than more expensive DNA evidence, in assisting courts in rape cases. Health care providers need training to provide high quality health care responses after rape, but we have shown that the core elements of the medico-legal response require very little technology. As such they should be replicable in low- and middle-income country settings. Our findings raise important questions about the value of evidence that requires the use of forensic laboratories at a population level in countries like South Africa that have substantial inefficiencies in their police services.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
Sexual violence has significant short- and long-term mental and physical health consequences for the victim. Estimates of how common rape is vary within and between countries. The World Health Organization (WHO) estimates that between 1% and 12% of women aged 15 or over have experienced sexual violence by a nonpartner. It has also been used as a weapon of war.
The WHO recognises that rape may be committed by a spouse, partner, or acquaintance as well as a stranger, that men can be victims as well as perpetrators, and that coercion need not be physical. It advocates preventing sexual violence through better support for victims, legal and policy changes, educational programmes, and campaigns to change attitudes, and better health care services and training for health care workers.
Health services for victims of rape have two important roles: to assist the victim and to gather evidence for the police and courts. Nonetheless, health services for victims of rape are often poor. Over the last decade, the South African government has taken steps to reduce particularly high rates of sexual violence by broadening the legal definition of rape and improving health services.
Why Was This Study Done?
Previous studies into how useful expert medical evidence is for the police and courts have focused almost exclusively on high-income countries. It is not clear what interventions work best in countries with fewer resources. The researchers wanted to know the impact of medical evidence on how the South African criminal justice system handled cases of rape and attempted rape.
What Did the Researchers Do and Find?
The authors analysed data from police and court files of 1,547 cases of rape or attempted rape first reported in 2003 to a random sample of police stations in Gauteng province, South Africa. They looked for associations between case data and the arrest, charge, trial, and conviction or acquittal of the alleged perpetrator. They included only cases that were closed when they collected data in 2006 and only cases that contained a record of a medical examination of the victim. The researchers used South Africa's then legal definition of rape as “intentional and unlawful vaginal sex with woman without consent.” They analysed cases involving adults and children (aged 0–17 years) separately. They found that the overall conviction rate was very low, with only 3% of adult cases and 7.4% of children's cases resulting in a guilty verdict. Many cases were dropped at each stage of the legal process and DNA evidence was often not collected or, if collected, not analysed. DNA reports were rarely available for the courts. Injuries were not associated with arrests for either adult or children's cases; an arrest took place in 40% of cases without injuries. Child cases were more likely to come to trial if injuries were present, although a guilty verdict was not more likely. The reverse was true in adult cases: the presence or absence of injury was not linked to cases being brought to trial, but if injuries were present, whether genital, nongenital, or both, a conviction was more likely.
What Do These Findings Mean?
One limitation of the research is that the researchers identified statistical associations of events, but this does not prove that one event caused the other. Other possible limitations of the study are that the researchers had access only to cases closed by the police, which may have biased their results, and the quality of the recorded data was very variable. In addition, the research did not consider other factors that may have affected case outcomes, such as how witnesses are perceived in court.
The system to collect and analyse DNA was rarely effective in making evidence available to the courts. It is known from other countries with effective systems that DNA evidence is of no value if the basis of defence is consent; for instance in cases where the accused is an intimate partner of the victim. Injuries appear not to be necessary to secure a conviction but may be seen as useful by the South African courts in corroborating the victim's testimony, at least in adult cases.
The authors conclude that in poor countries, training for nurses and/or doctors who act as forensic medical examiners in how to record injuries and present their evidence in court will be more effective than investing in costly systems for DNA analysis. However, they argue that in South Africa, as a middle-income country with a high proportion of nonintimate partner rapes, there would be benefit in improving the system to collect and analyse DNA evidence rather than abandoning it entirely.
Additional Information
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1000164.
Further information on rape in South Africa is available from the Tshwaranang Legal Advocacy Centre
Information on rape is also available from the Rape Crisis Cape Town Trust
Emergency rape information, facts about rape, events, legal services, and medical care can be found at the Speakout Web site
The World Health Organization publishes a factsheet on sexual violence, a report on violence and health, as well as guidelines on medico-legal care for victims of sexual violence
doi:10.1371/journal.pmed.1000164
PMCID: PMC2752115  PMID: 19823567
23.  Using Critical Literacy to Explore Genetics and its Ethical, Legal, and Social Issues with In-Service Secondary Teachers 
CBE Life Sciences Education  2010;9(4):422-430.
The described interdisciplinary course helped a mixed population of in-service secondary English and biology teacher-participants increase their genetics content knowledge and awareness of Ethical, Legal, and Social Implications (ELSI) that arose from discoveries and practices associated with the Human Genome Project. This was accomplished by applying a critical literacy approach that allows people develop cognitive skills such that they are able to “read the world” (Wink, 2004). The approach is one that permits readers to go beyond the literal text to examine what is present as well as what is missing as it relates to issues of equity and fairness. Becoming critically literate enabled these teacher-participants to challenge the subtle attitudes, values, and beliefs conveyed by a range of written and oral texts. The teacher-participants in this course improved their critical literacy skills by actively reading, critically writing about, and using evidence to support their conclusions about issues arising from advances in human genetics. A biologist, a linguist, and an educator collaboratively designed and taught the course. The personalized focus on the integration of thoughtful reading and writing in this class enhanced the teacher-participants' (n = 16) professional and intellectual development and will potentially improve learning in their biology and English classrooms in the future.
doi:10.1187/cbe.09-09-0065
PMCID: PMC2995759  PMID: 21123688
24.  Social media use by community-based organizations conducting health promotion: a content analysis 
BMC Public Health  2013;13:1129.
Background
Community-based organizations (CBOs) are critical channels for the delivery of health promotion programs. Much of their influence comes from the relationships they have with community members and other key stakeholders and they may be able to harness the power of social media tools to develop and maintain these relationships. There are limited data describing if and how CBOs are using social media. This study assesses the extent to which CBOs engaged in health promotion use popular social media channels, the types of content typically shared, and the extent to which the interactive aspects of social media tools are utilized.
Methods
We assessed the social media presence and patterns of usage of CBOs engaged in health promotion in Boston, Lawrence, and Worcester, Massachusetts. We coded content on three popular channels: Facebook, Twitter, and YouTube. We used content analysis techniques to quantitatively summarize posts, tweets, and videos on these channels, respectively. For each organization, we coded all content put forth by the CBO on the three channels in a 30-day window. Two coders were trained and conducted the coding. Data were collected between November 2011 and January 2012.
Results
A total of 166 organizations were included in our census. We found that 42% of organizations used at least one of the channels of interest. Across the three channels, organization promotion was the most common theme for content (66% of posts, 63% of tweets, and 93% of videos included this content). Most organizations updated Facebook and Twitter content at rates close to recommended frequencies. We found limited interaction/engagement with audience members.
Conclusions
Much of the use of social media tools appeared to be uni-directional, a flow of information from the organization to the audience. By better leveraging opportunities for interaction and user engagement, these organizations can reap greater benefits from the non-trivial investment required to use social media well. Future research should assess links between use patterns and organizational characteristics, staff perspectives, and audience engagement.
doi:10.1186/1471-2458-13-1129
PMCID: PMC3924229  PMID: 24313999
Community-based organizations; Social media; Health promotion; Content analysis
25.  Ethical and legal implications of the risks of medical tourism for patients: a qualitative study of Canadian health and safety representatives’ perspectives 
BMJ Open  2013;3(2):e002302.
Objectives
Medical tourism involves patients’ intentional travel to privately obtain medical care in another country. Empirical evidence regarding health and safety risks facing medical tourists is limited. Consideration of this issue is dominated by speculation and lacks meaningful input from people with specific expertise in patient health and safety. We consulted with patient health and safety experts in the Canadian province of British Columbia to explore their views concerning risks that medical tourists may be exposed to. Herein, we report on the findings, linking them to existing ethical and legal issues associated with medical tourism.
Design
We held a focus group in September 2011 in Vancouver, British Columbia with professionals representing different domains of patient health and safety expertise. The focus group was transcribed verbatim and analysed thematically.
Participants
Seven professionals representing the domains of tissue banking, blood safety, health records, organ transplantation, dental care, clinical ethics and infection control participated.
Results
Five dominant health and safety risks for outbound medical tourists were identified by participants: (1) complications; (2) specific concerns regarding organ transplantation; (3) transmission of antibiotic-resistant organisms; (4) (dis)continuity of medical documentation and (5) (un)informed decision-making.
Conclusions
Concern was expressed that medical tourism might have unintended and undesired effects upon patients’ home healthcare systems. The individual choices of medical tourists could have significant public consequences if healthcare facilities in their home countries must expend resources treating postoperative complications. Participants also expressed concern that medical tourists returning home with infections, particularly antibiotic-resistant infections, could place others at risk of exposure to infections that are refractory to standard treatment regimens and thereby pose significant public health risks.
doi:10.1136/bmjopen-2012-002302
PMCID: PMC3586128  PMID: 23396563
Qualitative Research

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