#web2salute

50 Abstracts of E-patient 1. Rev Med Liege. 2013 Feb;68(2):74-8. [Reticence to vaccination: an approach to the phenomenon through a literature review]. [Article in French] Ketterer F, Trefois P, Miermans MC, Vanmeerbeek M, Giet D. Département de Médecine générale, Université de Liège, Belgique. Although it exists since vaccination appeared, reticence towards vaccination seems to be increasing. Through a literature review, this article first analyses the reasons for this reticence. The decline of infectious diseases leads to greater attention to side effects of vaccines; on the other hand, the social evolution leads patients to search for zero risk in different aspects of life. Suspiciousness towards the State and the influence of media emphasizing potential deleterious effects of each vaccine are additional phenomena explaining people's hesitations. Anti-vaccination movements using Internet to disseminate their ideas are also responsible. Secondly, the article aims at assessing the public opinion about vaccination. It is still predominantly positive, even if questions remain. A typology of four patients' profiles based on statistical results is proposed. Finally, after having examined the medical doctors' opinion concerning vaccination, this article ends with some pieces of advice on how to deal with vaccination in the patient-doctor relationship. PMID: 23469487 [PubMed - indexed for MEDLINE] 2. J Cardiovasc Electrophysiol. 2013 Apr;24(4):480-3. doi: 10.1111/jce.12097. Epub 2013 Feb 19. Ubiquitous Wireless ECG Recording: A Powerful Tool Physicians Should Embrace. Saxon LA. Division of Cardiovascular Medicine, Keck School of Medicine, University of Southern California, Los Angeles, California, USA. Ubiquitous Wireless ECG Recording. The use of smart phones has increased dramatically and there are nearly a billion users on 3G and 4G networks worldwide. Nearly 60% of the U.S. population uses smart phones to access the internet, and smart phone sales now surpass those of desktop and laptop computers. The speed of wireless communication technology on 3G and 4G networks and the widespread adoption and use of iOS equipped smart phones (Apple Inc., Cupertino, CA, USA) provide infrastructure for the transmission of wireless biomedical data, including ECG data. These technologies provide an unprecedented opportunity for physicians to continually access data that can be used to detect issues before symptoms occur or to have definitive data when symptoms are present. The technology also greatly empowers and enables the possibility for unprecedented patient participation in their own medical education and health status as well as that of their social network. As patient advocates, physicians and particularly cardiac electrophysiologists should embrace the future and promise of wireless ECG recording, a technology solution that can truly scale across the global population. (J Cardiovasc Electrophysiol, Vol. 24, pp. 480-483, April 2013). © 2013 Wiley Periodicals, Inc. PMID: 23421574 [PubMed - in process] 3. JAMA Intern Med. 2013 Mar 11;173(5):345-51. doi: 10.1001/jamainternmed.2013.2512. Participatory surveillance of hypoglycemia and harms in an online social network. Weitzman ER, Kelemen S, Quinn M, Eggleston EM, Mandl KD. Children’sHospital Informatics Program, One Autumn Street, Boston, MA 02215, USA. elissa.weitzman@childrens.harvard.edu Comment in JAMA Intern Med. 2013 Mar 11;173(5):352-3. JAMA Intern Med. 2013 Mar 11;173(5):352-3. IMPORTANCE: Surveillance systems for elucidating the burden of hypoglycemia are limited. OBJECTIVE: To quantify experiences of hypoglycemia and related harms, members of an

international online diabetes social network with insulin-dependent diabetes mellitus were polled through a software application ("app"). Aggregate results were returned to participants through network channels. DESIGN: The study period was from March 2011 through April 2012, during which time retrospective reports about experiences with hypoglycemia and related harms were collected from participants using the app. SETTING: The study was undertaken within the TuDiabetes.org international online diabetes social network. PARTICIPANTS: Eligibility criteria included TuDiabetes membership, age 13 years or older, a self-reported diagnosis of diabetes mellitus, ability to read and write English, and Internet access. Of 2827 app users, 687 (response rate, 24.3%) opted in to the volunteer sample. MAIN OUTCOME MEASURES: Primary outcomes included the following: frequency of "going low" (having a low glucose value in the past 2 weeks) and episodes of severe hypoglycemia (in the past 12 months), and, for respondents reporting recent and/or severe hypoglycemia, lifetime experience of vehicle crashes or severe medical injury, daily debilitating worry, and withdrawal from driving, exercise, sex, and going outside of the home to avoid hypoglycemia and consequences. Secondary outcomes included measures of research engagement. RESULTS: Of 613 respondents (24.3% of app users), 49.1% reported more than 4 episodes of "going low" in the past 2 weeks and 29.2% reported 1 or more severe low in the past year; 16.6% reported both more than 4 recent low episodes and 1 or more severe event in the past year. Harms were common, including daily debilitating worry (45.8%), vehicle crash or injury (15.0%), and withdrawal from exercise, driving, leaving home, and having sex (54.0%, 37.4%, 24.8%, and 22.7%, respectively). Of all respondents, 54.2% reported multiple harms, the risks for which were highest (73.7%) among respondents with a past-year severe event (odds ratio, 2.39; 95% CI, 1.60-3.58; P < .001 controlling for frequent recent low episodes and demographic and disease factors). Engagement was high, with 96.6% of the sample permitting recontact for research and 31.7% posting personal study data on their app profile page; 40.5% of 2825 unique page views of research-related materials published on the community site involved views of returned research results. CONCLUSIONS AND RELEVANCE: Participatory surveillance of hypoglycemia in an online diabetes social network enables characterization of patient-centered harms in a community sample and bidirectional communication with affected persons, augmenting traditional surveillance. PMID: 23400234 [PubMed - in process] 4. J Med Pract Manage. 2012 Nov-Dec;28(3):206-9. Social media and you: what every physician needs to know. Chauhan B, George R, Coffin J. Georgia Health Sciences University, MCG/Family Medicine,1120 15th Street, HB 2050, Augusta, GA 30912, USA. bchauhan@georgiahealth.edu New healthcare models have been developed to keep up with the dynamic changes of the Internet revolution through social media. Physicians are taking this new technology and enhancing their communication with patients as well among the healthcare community including distributing public health information via Twitter and Facebook. However, a physician's freedom of speech via Twitter and blogs can reach millions instantly, causing irreversible harm. U.S. licensing authorities have reported numerous violations of professionalism by physicians resulting in disciplinary actions negatively impacting their careers. Federation of State Medical Boards guidelines advise that patient privacy must be protected at all times on social networking sites. In addition, employers and residency programs are also now searching Facebook and other social networking sites before hiring applicants. There are many benefits of social media; however, professionalism, patient privacy, and boundaries need to be maintained. PMID: 23373164 [PubMed - indexed for MEDLINE]

5. BMJ Qual Saf. 2013 Mar;22(3):251-5. doi: 10.1136/bmjqs-2012-001527. Epub 2013 Jan 24. Harnessing the cloud of patient experience: using social media to detect poor quality healthcare. Greaves F, Ramirez-Cano D, Millett C, Darzi A, Donaldson L. Department of Primary Care and Public Health, Imperial College London, UK. felix.greaves08@imperial.ac.uk Recent years have seen increasing interest in patient-centred care and calls it focus on improving the patient experience. At the same time, a growing number of patients are using the internet to describe their experiences of healthcare. We believe the increasing availability of patients' accounts of their care on blogs, social networks, Twitter and hospital review sites presents an intriguing opportunity to advance the patient-centred care agenda and provide novel quality of care data. We describe this concept as a 'cloud of patient experience'. In this commentary, we outline the ways in which the collection and aggregation of patients' descriptions of their experiences on the internet could be used to detect poor clinical care. Over time, such an approach could also identify excellence and allow it to be built on. We suggest using the techniques of natural language processing and sentiment analysis to transform unstructured descriptions of patient experience on the internet into usable measures of healthcare performance. We consider the various sources of information that could be used, the limitations of the approach and discuss whether these new techniques could detect poor performance before conventional measures of healthcare quality. PMID: 23349387 [PubMed - in process] 6. J Med Internet Res. 2013 Jan 24;15(1):e20. doi: 10.2196/jmir.2112. Quantifying short-term dynamics of Parkinson's disease using self-reported symptom data from an Internet social network. Little M, Wicks P, Vaughan T, Pentland A. Human Dynamics Group, Media Lab, Massachusetts Institute of Technology, Cambridge, MA 02139, United States. maxl@mit.edu. BACKGROUND: Parkinson's disease (PD) is an incurable neurological disease with approximately 0.3% prevalence. The hallmark symptom is gradual movement deterioration. Current scientific consensus about disease progression holds that symptoms will worsen smoothly over time unless treated. Accurate information about symptom dynamics is of critical importance to patients, caregivers, and the scientific community for the design of new treatments, clinical decision making, and individual disease management. Long-term studies characterize the typical time course of the disease as an early linear progression gradually reaching a plateau in later stages. However, symptom dynamics over durations of days to weeks remains unquantified. Currently, there is a scarcity of objective clinical information about symptom dynamics at intervals shorter than 3 months stretching over several years, but Internet-based patient self-report platforms may change this. OBJECTIVE: To assess the clinical value of online self-reported PD symptom data recorded by users of the health-focused Internet social research platform PatientsLikeMe (PLM), in which patients quantify their symptoms on a regular basis on a subset of the Unified Parkinson's Disease Ratings Scale (UPDRS). By analyzing this data, we aim for a scientific window on the nature of symptom dynamics for assessment intervals shorter than 3 months over durations of several years. METHODS: Online self-reported data was validated against the gold standard Parkinson's Disease Data and Organizing Center (PD-DOC) database, containing clinical symptom data at intervals greater than 3 months. The data were compared visually using quantile-quantile plots, and numerically using the Kolmogorov-Smirnov test. By using a simple piecewise linear trend estimation algorithm, the PLM data was smoothed to separate random fluctuations from

continuous symptom dynamics. Subtracting the trends from the original data revealed random fluctuations in symptom severity. The average magnitude of fluctuations versus time since diagnosis was modeled by using a gamma generalized linear model. RESULTS: Distributions of ages at diagnosis and UPDRS in the PLM and PD-DOC databases were broadly consistent. The PLM patients were systematically younger than the PD-DOC patients and showed increased symptom severity in the PD off state. The average fluctuation in symptoms (UPDRS Parts I and II) was 2.6 points at the time of diagnosis, rising to 5.9 points 16 years after diagnosis. This fluctuation exceeds the estimated minimal and moderate clinically important differences, respectively. Not all patients conformed to the current clinical picture of gradual, smooth changes: many patients had regimes where symptom severity varied in an unpredictable manner, or underwent large rapid changes in an otherwise more stable progression. CONCLUSIONS: This information about short-term PD symptom dynamics contributes new scientific understanding about the disease progression, currently very costly to obtain without self-administered Internet-based reporting. This understanding should have implications for the optimization of clinical trials into new treatments and for the choice of treatment decision timescales. PMID: 23343503 [PubMed - in process] 7. BMC Res Notes. 2012 Dec 27;5:699. doi: 10.1186/1756-0500-5-699. Cancer patients on Twitter: a novel patient community on social media. Sugawara Y, Narimatsu H, Hozawa A, Shao L, Otani K, Fukao A. Department of Medical Informatics, Graduate School of Medical Science,Yamagata University, Yamagata, Japan. BACKGROUND: Patients increasingly turn to the Internet for information on medical conditions, including clinical news and treatment options. In recent years, an online patient community has arisen alongside the rapidly expanding world of social media, or "Web 2.0." Twitter provides real-time dissemination of news, information, personal accounts and other details via a highly interactive form of social media, and has become an important online tool for patients. This medium is now considered to play an important role in the modern social community of online, "wired" cancer patients. RESULTS: Fifty-one highly influential "power accounts" belonging to cancer patients were extracted from a dataset of 731 Twitter accounts with cancer terminology in their profiles. In accordance with previously established methodology, "power accounts" were defined as those Twitter accounts with 500 or more followers. We extracted data on the cancerpatient (female) with the most followers to study the specific relationships that existed between the user and her followers, and found that the majority of the examined tweets focused on greetings, treatment discussions, and other instances of psychological support. These findings went against our hypothesis that cancer patients' tweets would be centered on the dissemination of medical information and similar "newsy" details. CONCLUSIONS: At present, there exists a rapidly evolving network of cancer patients engaged in information exchange via Twitter. This network is valuable in the sharing of psychological support among the cancer community. PMCID: PMC3599295 PMID: 23270426 [PubMed - in process] 8. BMJ Case Rep. 2012 Dec 13;2012. pii: bcr-2012-007223. Doi: 10.1136/bcr-2012-007223. Vitamin D3 as a novel treatment for irritable bowel syndrome: single case leads to critical analysis of patient-centred data. Sprake EF, Grant VA, Corfe BM. Molecular Gastroenterology Research Group, Academic Unit of Surgical Oncology, Department of Oncology, University of Sheffield, Sheffield, UK. Irritable bowel syndrome (IBS) is a chronic and debilitating functional disorder of the gastrointestinal tract with serious and detrimental impacts on

quality of life. Its aetiology is largely unknown and the identification of effective management strategies remains far from complete. This paper first reports, a case of a 41-year-old woman IBS sufferer who reported significant symptom improvements with high-dose vitamin D3 supplementation. The sufferer identified a substantial body of patient data surrounding this potential therapy on social media sites, and this paper, therefore, also reports the findings from a systematic analysis of patient-centred, internet-based data surrounding this phenomenon. Data from 37 IBS sufferers commenting on the effect of vitamin D supplementation on their condition were located; approximately 70% of these reported that high-dose supplementation improved their IBS symptoms. A randomised controlled trial into the effect of vitamin D supplementation on IBS symptomatology to test this association scientifically is merited. PMID: 23239770 [PubMed - in process] 10. J Adolesc Health. 2012 Dec;51(6):593-600. doi: 10.1016/j.jadohealth.2012.03.004. Epub 2012 Apr 17. ADHD knowledge, perceptions, and information sources: perspectives from a community sample of adolescents and their parents. Bussing R, Zima BT, Mason DM, Meyer JM, White K, Garvan CW. Department of Psychiatry, University of Florida, Gainesville, Florida 32610-0234, USA. rbussing@ufl.edu PURPOSE: The chronic illness model advocates for psychoeducation within a collaborative care model to enhance outcomes. To inform psychoeducational approaches for ADHD, this study describes parent and adolescent knowledge, perceptions, and information sources and explores how these vary by sociodemographic characteristics, ADHD risk, and past child mental health service use. METHODS: Parents and adolescents were assessed 7.7 years after initial school district screening for ADHD risk. The study sample included 374 adolescents (56% high and 44% low ADHD risk) aged, on average, 15.4 (standard deviation = 1.8) years, and 36% were African American. Survey questions assessed ADHD knowledge, perceptions, and cues to action and elicited used and preferred information sources. Multiple logistic regression was used to determine potential independent predictors of ADHD knowledge. McNemar tests compared information source utilization against preference. RESULTS: Despite relatively high self-rated ADHD familiarity, misperceptions among parents and adolescents were common, including a sugar etiology (25% and 27%, respectively) and medication overuse (85% and 67%, respectively). African American respondents expressed less ADHD awareness and greater belief in sugar etiology than Caucasians. Parents used a wide range of ADHD information sources, whereas adolescents relied on social network members and teachers/school. However, parents and adolescents expressed similar strong preferences for the Internet (49% and 51%, respectively) and doctor (40% and 27%, respectively) as ADHD information sources. CONCLUSIONS: Culturally appropriate psychoeducational strategies are needed that combine doctor-provided ADHD information with reputable Internet sources. Despite time limitations during patient visits, both parents and teens place high priority on receiving information from their doctor. Copyright © 2012 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved. PMCID: PMC3505280 [Available on 2013/12/1] PMID: 23174470 [PubMed - in process] 10. J Neurosurg Pediatr. 2013 Jan;11(1):26-36. doi: 10.3171/2012.9.PEDS12208. Epub 2012 Oct 23. Technology preferences among caregivers of children with hydrocephalus. Naftel RP, Safiano NA, Falola MI, Shannon CN, Wellons JC 3rd, Johnston JM Jr. Section of Pediatric Neurosurgery, Division of Neurosurgery, University of Alabama at

Birmingham, Children's of Alabama, Birmingham, AL, USA. naftel@uab.edu OBJECT: The Internet and social media are powerful disseminators of medical information, providing new portals for patient care. The authors of this study evaluated current technology hardware, Internet, and social media use and their socioeconomic relationships among caregivers of children with hydrocephalus. METHODS: A written survey was completed in the neurosurgical clinics at the University of Alabama at Birmingham by 300 parents of children with shunted hydrocephalus between October 26, 2010, and July 26, 2011. RESULTS: Computer use (94.6%), Internet use (91.7%), smartphone use (56.9%), and Internet research on hydrocephalus (81.9%) were prevalent. However, for each ofthese four utilizations there was significantly lower access by caregivers of minority races (p = 0.04, 0.03, 0.002, and < 0.0001, respectively), lower income (p = 0.02, 0.01, < 0.0001, and < 0.0001, respectively), and lower level of education (p = 0.001, 0.002, < 0.0001, and 0.001, respectively). Personal use of social media was prevalent (95.1% of all Internet users) with use being more prevalent among less-educated than higher-educated caregivers (p = 0.017). Hydrocephalus-related social media use (59.5% of Internet users) was not associated with socioeconomic factors. For hydrocephalus education on the Internet, caregivers chose information websites such as Wikipedia or the Hydrocephalus Association as preferred platforms; these preferences were followed by use of social media websites. Facebook and YouTube were the preferred social media platforms for personal and hydrocephalus-related use. Parents indicate moderate skepticism about the trustworthiness of the Internet; only 21.7% always trust the online sources. Most parents (89.8%) say that they would visit neurosurgeon-recommended websites. Of Internet-using caregivers, 28.6% use the Internet or social media to find hydrocephalus support groups, and 34.8% have used the Internet to communicate with other caregivers who have children withsimilar conditions. CONCLUSIONS: Technology hardware, the Internet, and social media are widely used with some skepticism by parents of children with shunted hydrocephalus. Caregivers are interested in physician-recommended Internet resources. Socioeconomic factors including race, income, and level of education reveal a disparity in access to some of these resources, although all groups have relatively high use. Unlike typical technology use, social media use is breaking down the digital divide among ethnic and socioeconomic groups. PMID: 23092227 [PubMed - indexed for MEDLINE] 11. Psychiatr Serv. 2012 Oct;63(10):1039-41. doi: 10.1176/appi.ps.201100484. The antipsychiatry movement: dead, diminishing, or developing? Whitley R. Douglas Mental Health University Institute, McGill University, 6875 LaSalle Blvd., Montreal, Quebec, Canada. robert.whitley@mcgill.ca It has been argued recently that the antipsychiatry movement has transmogrified into a patient-based consumer movement. Instead, the author suggests, various activities and ideas that legitimately could be described as antipsychiatry, or, at least, as highly critical of psychiatry, are burgeoning. These activities include the works of intellectual scholars, such as disgruntled psychiatrists, critical social scientists, and humanistic psychologists; the analyses and writings of high-profile and prominent investigative journalists; blogs, Web sites, and social media that communicate a disdain for psychiatry among citizen Internet activists; and the ongoing, well-documented critique of followers of Scientology. The author concludes that a renewed yet amorphous critique of psychiatry is emerging, even though the tarnished name of antipsychiatry is studiously avoided by all. This critique may intensify, given the likely media and public interest surrounding the upcoming release of DSM-5. PMID: 23032676 [PubMed - in process] 12. Acad Radiol. 2012 Nov;19(11):1408-14. doi: 10.1016/j.acra.2012.08.008.

Reflective practice as a tool to teach digital professionalism. Kung JW, Eisenberg RL, Slanetz PJ. Department of Radiology, Beth Israel Deaconess Medical Center, Boston, MA 02215, USA. jkung@bidmc.harvard.edu RATIONALE AND OBJECTIVES: Digital professionalism is increasingly being integrated into postgraduate medical education. We developed a small-group, reflective practice-based session incorporating radiology-specific cases to heighten residents' awareness about digital professionalism. MATERIALS AND METHODS: Case-based, radiology-specific scenarios were created for a small-group, reflective practice-based session on digital professionalism. Anonymous pre- and postsession surveys evaluating residents' use of social media and their thoughts about the session were administered to the radiology residents. RESULTS: Twenty-five of 38 (66%) residents responded to the presession survey with 40% (10/25) reporting daily social media use; 50% (12/24) witnessing an unprofessional posting on Facebook; and 8% (2/25) posting something unprofessional themselves. Of the 21 residents who attended the session, 13 (62%) responded to the postsession survey. Residents reported that the session added to their understanding of professionalism 3.92, 95% CI (3.57-4.27). As a result of the session, residents stated that they were more aware of protecting patient privacy and confidentiality on social media sites 3.92, 95% CI (3.47-4.37), and would take a more active role in ensuring professional use of social media as it relates to patient care 4.00, 95% CI (3.66-4.34). CONCLUSION: Residents favorably viewed the reflective case-based session on digital professionalism as a means to be more aware of ways to avoid unprofessional interactions on the internet. Our results suggest that such reflective sessions are an effective method to educate residents on key concepts regarding digital professionalism. Copyright © 2012 AUR. Published by Elsevier Inc. All rights reserved. PMID: 23026782 [PubMed - indexed for MEDLINE] 13. Patient Educ Couns. 2013 Jan;90(1):82-7. doi: 10.1016/j.pec.2012.08.006. Epub 2012 Sep 5. Survey of quality, readability, and social reach of websites on osteosarcoma in adolescents. Lam CG, Roter DL, Cohen KJ. Department of Oncology, St Jude Children's Research Hospital, Memphis, 38105 TN, USA. catherine.lam@stjude.org OBJECTIVE: Little is known about Internet resources for adolescent patients. This study assessed the quality, readability, and social reach of websites on an illustrative adolescent cancer diagnosis, osteosarcoma. METHODS: The top 50 results from four queries in two search engines were screened. Quality and readability were determined using standard DISCERN tool, Flesch Reading Ease and Flesch-Kinkaid Grade. Social reach was gauged by social networking links, global website traffic, and a pilot adolescent-specificity measure. RESULTS: Of 400 websites assessed, 56 (14%) met inclusion criteria. Websites' mean quality was fair (49.8 on 75 point scale; range 31.0-66.0, poor to excellent); 86% failed readability standards (Grade>8); 75% offered at least one social networking link; and 34% offered site-specific social media. More than 60% received over 50,000 visits in the past month. Only 12.5% included adolescent-specific content. Of the 10 websites ranked highest for quality, only one achieved both readability targets and adolescent-specific content. CONCLUSIONS: Although some patient-oriented websites on osteosarcoma are of acceptable quality, most failed readability targets, and few appeared to address adolescents. PRACTICE IMPLICATIONS: Better awareness of Internet health resources and social media for adolescents with cancer is needed to address gaps, promote health literacy and facilitate patient-provider communication. Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.

PMID: 22959332 [PubMed - in process] 14. Semin Cutan Med Surg. 2012 Sep;31(3):183-90. doi: 10.1016/j.sder.2012.06.002. Dermatology resources on the internet. George DD, Wainwright BD. St George's University School of Medicine, Grenada. Both patients and medical professionals are increasingly accessing the Internet for health information. Today's Web enables features that facilitate information sharing in a social and collaborative manner, thus transforming the way we access data and communicate with our patients and colleagues. The visual nature of the field of dermatology lends itself to the use of the Internet for reference and educational purposes. To generate a list of Web sites commonly used by academic dermatologists, the authors polled the Accreditation Council for Graduate Medical Education Dermatology Program Directors for their top 3 Web resources. The purpose of this article is to identify resources used by dermatologists as well as patients and examine factors that can influence Internet search results. Concerns regarding professionalism in the era of social media are also explored. As the volume of health information on the Internet continues to increase, it is essential for physicians to be aware of what is available in cyberspace. Reference and learning tools for the physician, learning and support tools for the patient, and physician Internet presence are key aspects of modern dermatology practice. Copyright © 2012 Elsevier Inc. All rights reserved. PMID: 22929356 [PubMed - indexed for MEDLINE] 15. Semin Cutan Med Surg. 2012 Sep;31(3):168-73. doi: 10.1016/j.sder.2012.06.003. Social media in dermatology: moving to Web 2.0. Travers RL. SkinCare Physicians, Chestnut Hill, MA 02476, USA. rtravers@skincarephysicians.net Patient use of social media platforms for accessing medical information has accelerated in parallel with overall use of the Internet. Dermatologists must keep pace with our patients' use of these media through either passive or active means are outlined in detail for 4 specific social media outlets. A 5-step plan for active engagement in social media applications is presented. Implications for medical professionalism, Health Insurance Portability and Accountability Act compliance, and crisis management are discussed. Copyright © 2012. Published by Elsevier Inc. PMID: 22929354 [PubMed - indexed for MEDLINE] 16. Orphanet J Rare Dis. 2012 Jun 15;7:40. A national internet-linked based database for pediatric interstitial lung diseases: the French network. Nathan N, Taam RA, Epaud R, Delacourt C, Deschildre A, Reix P, Chiron R, de Pontbriand U, Brouard J, Fayon M, Dubus JC, Giovannini-Chami L, Bremont F, Bessaci K, Schweitzer C, Dalphin ML, Marguet C, Houdouin V, Troussier F, Sardet A, Hullo E, Gibertini I, Mahloul M, Michon D, Priouzeau A, Galeron L, Vibert JF, Thouvenin G, Corvol H, Deblic J, Clement A; French RespiRare® Group. AP-HP, Hôpital Trousseau, Pediatric Pulmonary Department, Paris, France. nadia.nathan@trs.aphp.fr BACKGROUND: Interstitial lung diseases (ILDs) in children represent a heterogeneous group of rare respiratory disorders that affect the lung parenchyma. After the launch of the French Reference Centre for Rare Lung Diseases (RespiRare®), we created a national network and a web-linked database to collect data on pediatric ILD. METHODS: Since 2008, the database has been set up in all RespiRare® centres. After patient's parents' oral consent is obtained, physicians enter the data of children with ILD: identity, social data and environmental data; specific aetiological diagnosis of the ILD if known, genetics, patient visits

to the centre, and all medical examinations and tests done for the diagnosis and/or during follow up. Each participating centre has a free access to his own patients' data only, and cross-centre studies require mutual agreement. Physicians may use the system as a daily aid for patient care through a web-linked medical file, backed on this database. RESULTS: Data was collected for 205 cases of ILD. The M/F sex ratio was 0.9. Median age at diagnosis was 1.5 years old [0-16.9]. A specific aetiology was identified in 149 (72.7%) patients while 56 (27.3%) cases remain undiagnosed. Surfactant deficiencies and alveolar proteinosis, haemosiderosis, and sarcoidosis represent almost half of the diagnoses. Median length of follow-up is 2.9 years [0-17.2]. CONCLUSIONS: We introduce here the French network and the largest national database in pediatric ILDs. The diagnosis spectrum and the estimated incidence are consistent with other European databases. An important challenge will be to reduce the proportion of unclassified ILDs by a standardized diagnosis work-up. This database is a great opportunity to improve patient care and disease pathogenesis knowledge. A European network including physicians and European foundations is now emerging with the initial aim of devising a simplified European database/register as a first step to larger European studies. PMCID: PMC3458912 PMID: 22704798 [PubMed - indexed for MEDLINE] 17. Neurodiagn J. 2012 Mar;52(1):34-41. Ethical considerations in internet use of electronic protected health information. Polito JM. Neurology Department, South Shore Hospital, Weymouth, Massachusetts, USA. Caregivers, patients, and their family members are increasingly reliant on social network websites for storing, communicating, and referencing medical information. The Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule seeks balance by protecting the privacy of patients' health information and assuring that this information is available to those who need it to provide health care. Though federal and state governments have created laws and policies to safeguard patient privacy and confidentiality, the laws are inadequate against the rapid and innovative use of electronic health websites. As Internet use broadens access to information, health professionals must be aware that this information is not always secure. We must identify and reflect on medical ethics issues and be accountable for maintaining privacy for the patient. PMID: 22558645 [PubMed - indexed for MEDLINE] 18. J Med Internet Res. 2012 May 3;14(3):e54. doi: 10.2196/jmir.1824. Interaction patterns of nurturant support exchanged in online health social networking. Chuang KY, Yang CC. College of Information Science and Technology, Drexel University, Philadelphia, PA, USA. katychuang@drexel.edu BACKGROUND: Expressing emotion in online support communities is an important aspect of enabling e-patients to connect with each other and expand their social resources. Indirectly it increases the amount of support for coping with health issues. Exploring the supportive interaction patterns in online health social networking would help us better understand how technology features impacts user behavior in this context. OBJECTIVE: To build on previous research that identified different types of social support in online support communities by delving into patterns of supportive behavior across multiple computer-mediated communication formats. Each format combines different architectural elements, affecting the resulting social spaces. Our research question compared communication across different formats of text-based computer-mediated communication provided on the MedHelp.org health social networking environment. METHODS: We identified messages with nurturant support (emotional, esteem, and network) across three different computer-mediated communication formats (forums, journals, and notes) of

an online support community for alcoholism using content analysis. Our sample consisted of 493 forum messages, 423 journal messages, and 1180 notes. RESULTS: Nurturant support types occurred frequently among messages offering support (forum comments: 276/412 messages, 67.0%; journal posts: 65/88 messages, 74%; journal comments: 275/335 messages, 82.1%; and notes: 1002/1180 messages, 84.92%), but less often among messages requesting support. Of all the nurturing supports, emotional (ie, encouragement) appeared most frequently, with network and esteem support appearing in patterns of varying combinations. Members of the Alcoholism Community appeared to adapt some traditional face-to-face forms of support to their needs in becoming sober, such as provision of encouragement, understanding, and empathy to one another. CONCLUSIONS: The computer-mediated communication format may have the greatest influence on the supportive interactions because of characteristics such as audience reach and access. Other factors include perception of community versus personal space or purpose of communication. These results lead to a need for further research. PMID: 22555303 [PubMed - indexed for MEDLINE] 19. J Med Internet Res. 2012 May 1;14(3):e61. doi: 10.2196/jmir.1992. Use of social media by Western European hospitals: longitudinal study. Van de Belt TH, Berben SA, Samsom M, Engelen LJ, Schoonhoven L. Radboud REshape and Innovation Centre, Radboud University Nijmegen Medical Centre, Nijmegen, Netherlands. t.vandebelt@reshape.umcn.nl BACKGROUND: Patients increasingly use social media to communicate. Their stories could support quality improvements in participatory health care and could support patient-centered care. Active use of social media by health care institutions could also speed up communication and information provision to patients and their families, thus increasing quality even more. Hospitals seem to be becoming aware of the benefits social media could offer. Data from the United States show that hospitals increasingly use social media, but it is unknown whether and how Western European hospitals use social media. OBJECTIVE: To identify to what extent Western European hospitals use social media. METHODS: In this longitudinal study, we explored the use of social media by hospitals in 12 Western European countries through an Internet search. We collected data for each country during the following three time periods: April to August 2009, August to December 2010, and April to July 2011. RESULTS: We included 873 hospitals from 12 Western European countries, of which 732 were general hospitals and 141 were university hospitals. The number of included hospitals per country ranged from 6 in Luxembourg to 347 in Germany. We found hospitals using social media in all countries. The use of social media increased significantly over time, especially for YouTube (n = 19, 2% to n = 172, 19.7%), LinkedIn (n =179, 20.5% to n = 278, 31.8%), and Facebook (n = 85, 10% to n = 585, 67.0%). Differences in social media usage between the included countries were significant. CONCLUSIONS: Social media awareness in Western European hospitals is growing, as well as its use. Social media usage differs significantly between countries. Except for the Netherlands and the United Kingdom, the group of hospitals that is using social media remains small. Usage of LinkedIn for recruitment shows the awareness of the potential of social media. Future research is needed to investigate how social media lead to improved health care. PMID: 22549016 [PubMed - indexed for MEDLINE] 20. Am Surg. 2012 May;78(5):555-8. Social media, surgeons, and the Internet: an era or an error? Azu MC, Lilley EJ, Kolli AH. Cancer Institute of New Jersey, New Brunswick, New Jersey 08903, USA. azumc@umdnj.edu

According to the National Research Corporation, 1 in 5 Americans use social media sites to obtain healthcare information. Patients can easily access information on medical conditions and medical professionals; however physicians may not be aware of the nature and impact of this information. All physicians must learn to use the Internet to their advantage and be acutely aware of the disadvantages. Surgeons are in a unique position because, unlike in the primary care setting, less time is spent developing a long-term relationship with the patient. In this literature review, we discuss the impact of the Internet, social networking websites, and physician rating websites and make recommendations for surgeons about managing digital identity and maintaining professionalism. PMID: 22546128 [PubMed - indexed for MEDLINE] 21. IEEE Trans Inf Technol Biomed. 2012 Jul;16(4):737-44. Doi: 10.1109/TITB.2012.2194717. Epub 2012 Apr 16. Anonymous indexing of health conditions for a similarity measure. Song I, Marsh NV. James Cook University of Australia, School of Business/IT, Singapore. insu.song@jcu.edu.auA health social network is an online information service which facilitates information sharing between closely related members of a community with the same or a similar health condition. Over the years, many automated recommender systems have been developed for social networking in order to help users find their communities of interest. For health social networking, the ideal source of information for measuring similarities of patients is the medical information of the patients. However, it is not desirable that such sensitive and private information be shared over the Internet. This is also true for many other security sensitive domains. A new information-sharing scheme is developed where each patient is represented as a small number of (possibly disjoint) d-words (discriminant words) and the d-words are used to measure similarities between patients without revealing sensitive personal information. The d-words are simple words like "food,'' and thus do not contain identifiable personal information. This makes our method an effective one-way hashing of patient assessments for a similarity measure. The d-words can be easily shared on the Internet to find peers who might have similar health conditions. PMID: 22531815 [PubMed - indexed for MEDLINE] 22. Cancer Nurs. 2013 Mar;36(2):163-72. doi: 10.1097/NCC.0b013e31824eb879. Blogging through cancer: young women's persistent problems shared online. Keim-Malpass J, Baernholdt M, Erickson JM, Ropka ME, Schroen AT, Steeves RH. School of Nursing, University of Virginia, Charlottesville, VA 22908, USA. jlk2t@virginia.edu BACKGROUND: Many young women have turned to illness blogs to describe their lived experience with cancer. Blogs represent an untapped source of knowledge for researchers and clinicians. OBJECTIVE: The purpose of this qualitative, exploratory study was to describe the life disruptions caused by cancer among young women, as well as to understand the facilitators and barriers in accessing healthcare services during and after active treatment. METHODS: Sixteen Internet illness blogs were analyzed among women, aged between 20 and 39 years, diagnosed with cancer. These blogs were analyzed based on phenomenological qualitative methods and thematic analysis. RESULTS: There were 4 dimensions of persistent problems that were articulated in the narratives of the young women without any relief. They included pain and fatigue, insurance and financial barriers, concerns related to fertility, and symptoms of posttraumatic stress and anxiety. CONCLUSION: The young women's narratives capture fear, uncertainty, anger, and the debilitating nature of these persistent issues. Many of the women expressed their lingering physical, psychosocial, and emotional problems. IMPLICATIONS FOR PRACTICE: Online illness narratives are a naturalistic form of inquiry that

allows nurses to understand the experience of the patient through their own words and accounts. This study provides a foundation for nursing-based interventions that transcend traditional clinic experiences. PMID: 22495504 [PubMed - in process] 23. Support Care Cancer. 2012 Nov;20(11):2737-46. doi: 10.1007/s00520-012-1395-x. Epub 2012 Mar 3. Testicular cancer survivors' supportive care needs and use of online support: a cross-sectional survey. Bender JL, Wiljer D, To MJ, Bedard PL, Chung P, Jewett MA, Matthew A, Moore M, Warde P, Gospodarowicz M. ELLICSR: Health, Wellness and Cancer Survivorship Centre, Toronto General Hospital, 200 Elizabeth Street, Toronto, M5G 2C4, ON, Canada. INTRODUCTION: The supportive care needs of testicular cancer survivors have not been comprehensively studied. Likewise, there is limited research on their use of the Internet or social media applications--tools that are popular among young adults and which could be used to address their needs. METHODS: Two hundred and four testicular cancer patients receiving care at an urban cancer center completed a questionnaire assessing supportive care needs and the use and preferences for online support. We examined the associations between patient characteristics and met or unmet supportive care needs and the use of testicular cancer online communities. RESULTS: Respondents had more met (median 8.0, interquartile range (IQR) 10.0) than unmet (median 2.0, IQR 7.0) needs. The majority (62.5%) reported at least one unmet need, most commonly (25%) concerning financial support, body image, stress, being a cancer survivor, and fear of recurrence. Patients who were younger, had nonseminoma testicular cancer, or received treatment beyond surgery had more needs, and those who were unemployed had more unmet needs. The majority of respondents (71.5%) were social media users (e.g., Facebook), and 26% had used a testicular cancer online support community. Reasons for nonuse were lack of awareness (34.3%), interest (30.9%), trust (4.9%), and comfort using computers (2.5%). Users were more likely to speak English as a first language and have more needs. CONCLUSIONS: At least one in four testicular cancer survivors has unmet needs related to financial support, body image, stress, being a cancer survivor, and fear of recurrence. A web-based resource may be a useful strategy to consider given the high prevalence of social media use in this sample and their desire for online support. Efforts are needed to raise awareness about online peer support resources and to overcome barriers to their use. PMID: 22382589 [PubMed - indexed for MEDLINE] 24. Ann Saudi Med. 2012 Mar-Apr;32(2):117-20. The future of health care delivery and the experience of a tertiary care center in Saudi Arabia. Alsanea N. Colon & Rectal Section, Department of Surgery, King Faisal Specialist Hospital and Research Centre, Riyadh, Saudi Arabia. nsanea@kfshrc.edu.sa Five major technological changes will herald a new era in health care delivery around the World: digitalization of the personal health record, sharing of health care digital data across different platforms, applications and institutions, delivery of patient services via the internet, use of the digital media and social networking as a medium for education and preventive medicine and introduction of smart applications as counselors to prevent medical errors. The implications of such changes are huge. Saudi Arabia is not isolated from such important developments. This article explores the future of health care delivery with a special focus on the experience of a tertiary care center in Saudi Arabia that has led the wave in such changes regionally. PMID: 22366822 [PubMed - in process]

25. J Med Internet Res. 2012 Feb 9;14(1):e27. doi: 10.2196/jmir.1999. Online availability and safety of drugs in shortage: a descriptive study of internet vendor characteristics. Liang BA, Mackey TK. Institute of Health Law Studies, California Western School of Law, San Diego, CA 92101, United States. baliang@alum.mit.edu BACKGROUND: Unprecedented drug shortages announced by the US Food and Drug Administration (FDA) have severely affected therapeutic access, patient safety, and public health. With continued shortages, patients may seek drugs online. OBJECTIVE: To assess the prevalence of online marketing for current FDA shortage drugs and potential patient safety risks. METHODS: We performed a descriptive study of the prevalence of online marketing for shortage drugs-that is, offers for sale of each drug, includingcharacteristics of online drug sellers and intermediary sites marketing thesev drugs. RESULTS: Of the 72 FDA shortage-listed drugs, 68 (94%) were offered for sale online. We found 291 offers for these drugs, the vast majority (n = 207, 71.1%) by online drug sellers selling direct to consumers. Intermediary sites included data aggregators (n = 22, 8%), forum links (n = 23, 8%), and personal page data links (n = 34, 12%), as well as Flickr social media links (n = 5, 2%), all advertising drugs without a prescription. Of the 91 online drug sellers identified, 31 (34%) had more than 1 shortage drug offered for sale, representing most (n = 148, 71%) of all online drug seller sales offers. The majority of these online drug sellers (n = 21, 68%) were on the National Association of Boards of Pharmacy (NABP) Not Recommended Sites list. Finally, for shortage drugs with an online drug seller (n = 58, 85%), 53 (91%) had at least one site on the Not Recommended list and 21 (36%) had only sites on the Not Recommended list. CONCLUSIONS: FDA shortage drugs are widely marketed over the Internet. Suspect online drug sellers and intermediaries dominate these sales offers. As a critical risk management issue, patients, providers, and policymakers should be extremely cautious in procuring shortage drugs through Internet sourcing. PMCID: PMC3374535 PMID: 22321731 [PubMed - indexed for MEDLINE] 26. Inflamm Bowel Dis. 2012 Nov;18(11):2099-106. doi: 10.1002/ibd.22895. Epub 2012 Jan 27. Development of an internet-based cohort of patients with inflammatory bowel diseases (CCFA Partners): methodology and initial results. Long MD, Kappelman MD, Martin CF, Lewis JD, Mayer L, Kinneer PM, Sandler RS. University of North Carolina, Department of Medicine, Division of Gastroenterology and Hepatology, Chapel Hill, North Carolina 27599, USA. millie_long@med.unc.edu BACKGROUND: The widespread use of the Internet allows for unique research opportunities. We aimed to develop and follow an Internet-based cohort (e-cohort) vof patients with self-reported inflammatory bowel diseases (IBD) over time. METHODS: We established an e-cohort of adults with IBD (CCFA Partners) byvrecruiting through Crohn's and Colitis Foundation of America (CCFA) email rosters, CCFA Website promotion, social media, and other publicity mechanisms. The baseline survey included modules on disease course and activity, diet and exercise, and patient-reported outcomes (PROs). Baseline characteristics of thevcohort are summarized using descriptive statistics. RESULTS: A total of 7819 adults with IBD joined CCFA Partners through August, 2011. The median age was 42 years (interquartile range [IQR] 30-54), 5074 (72.3%) were female. A total of 4933 (63.1%) had Crohn's disease (CD), 2675 (34.2%) had ulcerative colitis (UC), and 211 (2.7%) had IBD unspecified. For CD, the mean short CD Activity Index (CDAI) was 151.9 (standard deviation [SD] 106.4), with 2274 (59.4%) in

remission. For UC, the mean simple clinical colitis activity index (SCCAI) was 3.6 (SD 2.8), with 937 (42.9%) in remission. The mean short IBD questionnaire (SIBDQ) score was 48.7 (SD 11.8). SIBDQ was inversely correlated with disease activity (P < 0.01). The mean Morisky medication adherence score (MMAS) was 5.7 (SD 2.0). MMAS scores were inversely correlated with disease activity (P < 0.01). CONCLUSIONS: CCFA Partners is a novel e-cohort. Enrollment is ongoing, with surveys twice yearly. CCFA Partners represents a unique resource to study PROs and changes in disease management over time. Copyright © 2012 Crohn's & Colitis Foundation of America, Inc. PMID: 22287300 [PubMed - indexed for MEDLINE] 27. Ecancermedicalscience. 2011;5:235. doi: 10.3332/ecancer.2011.235. Epub 2011 Nov 9. Online information needs of cancer patients and their organizations. Maddock C, Lewis I, Ahmad K, Sullivan R. Tenovus, Gleider House, Ty Glas Road, Cardiff, CF14 5BD, UK. Increasingly patients, relatives and carers are accessing health information via the internet. However, the health profession and people affected by cancer are becoming concerned with the quality of that information. A European survey was conducted under the auspices of the FP7 European Commission funded Eurocancercoms project during the period September 2010-March 2011. Its aim was to assess current online information needs of people with cancer particularly those who seek information using online social media technologies and the internet more broadly. A literature review was undertaken to gain a greater understanding of health seeking behaviour regarding cancer patients' information needs and patient preferences for accessing different formats and media. This was used to inform the design and validation of online pan-European, multi-lingual questionnaires distributed via patient organizations and via specific Eurocancercoms partner organizations. This paper presents the results of this survey and suggests recommendations to be incorporated into the design of the online platform, ecancerHub, one of the intended outcomes of the Eurocancercoms project following this research. People want a wide variety of easy to find, easy to understand accurate information about cancer and how it is likely to impact on their everyday lives and on those close to them. They differ in the amount and detail of the information they would like and on their ability to identify quality information and understand it sufficiently to base their health-care decisions on. The majority of respondents raised the issue of quality of information and many requested recommendations of websites by the people who usually influence them most, the health professionals involved in their care. PMCID: PMC3239170 PMID: 22276067 [PubMed] 28. Inflamm Bowel Dis. 2012 Jun;18(6):1156-63. doi: 10.1002/ibd.22834. Epub 2011 Dec 6. Internet and electronic resources for inflammatory bowel disease: a primer for providers and patients. Fortinsky KJ, Fournier MR, Benchimol EI. Division of Gastroenterology, Hepatology & Nutrition, Children's Hospital of Eastern Ontario, Ottawa, Canada. Patients with inflammatory bowel disease (IBD) are increasingly turning to the Internet to research their condition and engage in discourse on their experiences. This has resulted in new dynamics in the relationship between providers and their patients, with misinformation and advertising potentially presenting barriers to the cooperative patient-provider partnership. This article addresses important issues of online IBD-related health information and social media activity, such as quality, reliability, objectivity, and privacy. We reviewed the medical literature on the quality of online information provided to IBD patients, and summarized the most commonly accessed Websites related to IBD. We also assessed the activity on popular social media sites (such as Facebook,

Twitter, and YouTube), and evaluated currently available applications for use by IBD patients and providers on mobile phones and tablets. Through our review of the literature and currently available resources, we developed a list of recommended online resources to strengthen patient participation in their care by providing reliable, comprehensive educational material. Copyright © 2011 Crohn's & Colitis Foundation of America, Inc. PMID: 22147497 [PubMed - indexed for MEDLINE] 29. J Health Care Poor Underserved. 2011;22(4 Suppl):146-64. Doi: 10.1353/hpu.2011.0162. Socio-demographic psychosocial and clinical characteristics of participants in e-HealthyStrides©: an interactive ehealth program to improve diabetes self-management skills. Pemu PE, Quarshie AQ, Josiah-Willock R, Ojutalayo FO, Alema-Mensah E, Ofili EO. Morehouse School of Medicine, 720 Westview Drive SW, Atlanta, GA 30310, USA. pipemu@msm.edu Diabetes self-management (DSM) training helps prevent diabetic complications. eHealth approaches may improve its optimal use. The aims were to determine a) acceptability of e-HealthyStrides© (an interactive, Internet-based, patient-driven, diabetes self-management support and social networking program) among Morehouse Community Physicians' Network diabetics; b) efficacy for DSM behavior change c) success factors for use of e-HealthyStrides©. Baseline characteristics of pilot study participants are reported. Of those approached, 13.8% agreed to participate. Among participants, 96% were Black, 77% female; age 56±9.2 years; education: 44% college or higher and 15% less than 12th grade;92.5% with home computers. Over half (51%) failed the Diabetes Knowledge Test. Nearly half (47%) were at goal A1C; 24% at goal blood pressure; 3% at goal LDL cholesterol level. Median (SD) Diabetes Empowerment Scale score = 3.93 (0.72) but managing psychosocial aspects = 3.89 (0.89) scored lower than other domains. There was low overall confidence for DSM behaviors. Assistance with healthy eating was the most frequently requested service. Requestors were more obese with worse A1C than others. Chronic care delivery scored average with high scores for counseling and problem solving but low scores for care coordination and follow up. PMCID: PMC3571092 PMID: 22102311 [PubMed - indexed for MEDLINE] 30. Acad Emerg Med. 2011 Nov;18(11):1217-9. doi: 10.1111/j.1553-2712.2011.01199.x. Epub 2011 Nov 1. How Facebook saved our day! Ben-Yakov M, Snider C. maxim.benyakov@utoronto.ca Comment in Acad Emerg Med. 2011 Nov;18(11):1221-2. Facebook and social media networking applications use is ubiquitous across all ages and cultures. Facebook has finally begun to appear in the medical-scientific press. Today's medical literature is focused on concerns of professionalism in young health care practitioners vis-à -vis the lay public as they continuously expose themselves through this online social medium. With over 500 million users, Facebook hosts many of our patients, who are also exposed to the Internet and social media. Nobody so far has considered the opposite issue: that of physician invasion of privacy by "looking-up" a patient on Facebook during clinical practice for purposes of history-taking or diagnostic clues in situations where patients are too ill to provide needed information. We need to consider the ethical implications of privacy invasion in the current era of information technology. We need to acquire and maintain a certain level of "social media competency" to better debate the issues around Facebook and how we integrate on-line content with our patients' histories of present illness (HPI) or past medical histories (if at all). © 2011 by the Society for Academic Emergency Medicine. PMID: 22044488 [PubMed - indexed for MEDLINE]

31. Tumori. 2011 Jul-Aug;97(4):510-6. doi: 10.1700/950.10406. National Cancer Information Service in Italy: an information points network as a new model for providing information for cancer patients. Truccolo I, Bufalino R, Annunziata MA, Caruso A, Costantini A, Cognetti G, Florita A, Pero D, Pugliese P, Tancredi R, De Lorenzo F. Biblioteca Scientifica e per i Pazienti, Centro di Riferimento Oncologico IRCCS, Aviano, Italy. The international literature data report that good information and communication are fundamental components of a therapeutic process. They contribute to improve the patient-health care professional relationship, to facilitate doctor-patient relationships, therapeutic compliance and adherence, and to the informed consent in innovative clinical trials. We report the results of a multicentric national initiative that developed a 17-information-structure network: 16 Information Points located in the major state-funded certified cancer centers and general hospitals across Italy and a national Help-line at the nonprofit organization AIMaC (the Italian oncologic patients, families and friends association), and updated the already existing services with the aim to create the National Cancer Information Service (SION). The project is the result of a series of pilot and research projects funded by the Italian Ministry of Health. The Information Service model proposed is based on some fundamental elements: 1) human interaction with experienced operators, adequately trained in communication and information, complemented with 2) virtual interaction (Help line, Internet, blog, forum and social network); 3) informative material adequate for both scientific accuracy and communicative style; 4) adequate locations for appropriate positioning and privacy (adequate visibility); 5) appropriate advertising. First results coming from these initiatives contributed to introduce issues related to "Communication and Information to patients" as a "Public Health Instrument" to the National Cancer Plan approved by the Ministry of Health for the years 2010-2012. PMID: 21989442 [PubMed - indexed for MEDLINE] 32. Reprod Biomed Online. 2011 Nov;23(5):592-9. doi: 10.1016/j.rbmo.2011.07.005. Epub 2011 Jul 18. Brokers, consumers and the internet: how North American consumers navigate their infertility journeys. Speier AR. Anthropology, Eckerd College, St. Petersburg, FL 33711, USA. speiera@eckerd.edu Comment in Reprod Biomed Online. 2011 Dec;23(7):817-9. North Americans who suffer infertility often reach an end to treatment options at home, whether it is due to a lack of egg donors in Canada or the high cost of treatment in the USA. Patients navigate their way onto the internet, seeking support and other options. As women and couples 'do the research' online, they conduct endless Google searches, come across IVF brokers, join support groups, read blogs and meet others on the road of infertility. This paper considers the journeys that North American patients make to clinics in Moravia, Czech Republic. Along these travels, patients engage with support groups, other patients, IVF brokers and clinic co-ordinators. Since the distance travelled between North America and Europe is extensive, reproductive travels may be arranged by clinical staff, travel brokers and patients. Acting as consumers, North Americans make different 'choices' along their journeys – the use of a broker, if and when they should join online communities, which clinic to visit and where to stay. This study focuses on the question of how patient choices often determine the success of brokers and clinics, thus influencing the structure of cross-border reproductive care in the Czech Republic. Copyright © 2011 Reproductive Healthcare Ltd. Published by Elsevier Ltd. All rights reserved. PMID: 21955489 [PubMed - indexed for MEDLINE] 33. J Adolesc Health. 2011 Oct;49(4):414-20. doi: 10.1016/j.jadohealth.2011.02.004. Epub 2011

May 24. The decision to access patient information from a social media site: what would you do? Jent JF, Eaton CK, Merrick MT, Englebert NE, Dandes SK, Chapman AV, Hershorin ER. Department of Pediatrics, Leonard M. Miller School of Medicine, University of Miami, Miami, Florida 33136, USA. jjent@med.miami.edu PURPOSE: The current study examined the prevalence with which healthcare providers use a social media site (SMS) account (e.g., Facebook), the extent to which they use SMSs in clinical practice, and their decision-making process after accessing patient information from an SMS. METHODS: Pediatric faculty and trainees from a medical school campus were provided a SMS history form and seven fictional SMS adolescent profile vignettes that depicted concerning information. Participants were instructed to rate their personal use and beliefs about SMSs and to report how they would respond if they obtained concerning information about an adolescent patient from their public SMS profile. RESULTS: Healthcare providers generally believed it not to be an invasion of privacy to conduct an Internet/SMS search of someone they know. A small percentage of trainees reported a personal history of conducting an Internet search (18%) or an SMS search (14%) for a patient. However, no faculty endorsed a history of conducting searches for patients. Faculty and trainees also differed in how they would respond to concerning SMS adolescent profile information. CONCLUSIONS: The findings that trainees are conducting Internet/SMS searches of patients and that faculty and trainees differ in how they would respond to concerning profile information suggest the need for specific guidelines regarding the role of SMSs in clinical practice. Practice, policy, and training implications are discussed. Copyright © 2011 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved. PMCID: PMC3179605 PMID: 21939873 [PubMed - indexed for MEDLINE] 34. Nephrol Dial Transplant. 2012 Apr;27(4):1542-7. doi: 10.1093/ndt/gfr452. Epub 2011 Aug 23. What influences patient choice of treatment modality at the pre-dialysis stage? Chanouzas D, Ng KP, Fallouh B, Baharani J. Renal Department, Birmingham Heartlands Hospital, Heart of England NHS Foundation Trust, Birmingham, UK. dgchanouzas@doctors.org.uk BACKGROUND: There is little information on factors influencing patient choice of renal replacement modality (RRM) in the UK. Pre-dialysis education programmes have been associated with increased uptake of peritoneal dialysis (PD) in other countries but their relevance in informing patient choice within UK centres has not been extensively studied. In this study, we examined how patient choice of different treatment modalities [haemodialysis (HD), PD and conservative management (CM)] is influenced by personal and demographic parameters. METHODS: Questionnaires were sent to 242 pre-dialysis patients from a single centre. Patients were asked to rate factors affecting their treatment choice. Demographics, functional status, educational day attendance and Charlson index (CI) scores were also collected. RESULTS: One hundred and eighteen replies were received. Seventy per cent of patients had chosen HD, 20% PD and 10% had opted for CM. There was a clear association between age and modality choice. Mean age of patients choosing PD was 55 years compared to 68 years for HD and 84 years for CM (P<0.001). Similarly, the degree of co-morbidity was linked with treatment choice, with patients choosing PD having a mean CI score of 4.1 compared to 5.8 among HD patients and 7.7 for CM (P<0.001). Factors rated as important by all three groups were: the ability to cope, fitting modality with lifestyle, distance to centre and verbal and written information about modality. Conversely, factors rated as not important by all groups were: use of internet, religious beliefs and friends' views. Using analysis of variance, there was a statistically significant variance between the

HD and the PD group responses in the following factors: provision of written information (P=0.048), fitting modality with lifestyle (P=0.025), family/home/work circumstances (P=0.003) and past medical history (P=0.018). Fifty per cent of patients who chose PD attended a formal education day compared to 32.9% that chose HD and 0% that chose CM (P=0.011). The following demographic factors were crucial in predicting RRM choice: being married (PD 95.7%, HD 53.8%, CM 41.7%; P<0.001), being employed (PD 33.3%, HD 11.5%, CM 0%; P=0.015) and having another person living at home (PD 100%, HD 69.5%, CM 50%; P=0.003). Patients who have had a social services assessment in the last 12 months or received private care services or disability allowance were more likely to choose CM. CONCLUSIONS: This study highlights important factors influencing patient choice of end-stage renal disease treatment modality including CM. While some of these are non-modifiable, such as age and degree of co-morbidity, others draw attention to the importance of good information provision and pre-dialysis education in empowering socially able patients to choose self-care therapies. Furthermore, the overwhelming association of having a strong social support network and being functionally able with choosing PD emphasizes the need for assisted PD. PMID: 21865216 [PubMed - indexed for MEDLINE] 35. Semin Oncol Nurs. 2011 Aug;27(3):169-82. doi: 10.1016/j.soncn.2011.04.002. Consumer empowerment in health care amid the internet and social media. Lober WB, Flowers JL. Schools ofNursing, Medicine, and Public Health, University ofWashington, Seattle, WA, USA. lober@uw.edu OBJECTIVES: Consumer empowerment in health and rapid change in health information and communication technologies have their roots in broader social trends. This article reviews the activities at the intersection of consumer empowerment and technology. DATA SOURCES: Technical reports, white papers, books, journal articles, and Web sites. CONCLUSION: Social trends are visible in the integration of information and communication technologies into health care, in both searching for and sharing information on the Internet, in the use of social media to create new types of interactions with family, providers, and peers, and in the e-patient, who integrates these new roles and new technologies. IMPLICATIONS FOR NURSING PRACTICE: Changes in both patients and technology will impact oncology nursing practice as new, patient-centered, interactions emerge. Copyright © 2011 Elsevier Inc. All rights reserved. PMID: 21783008 [PubMed - indexed for MEDLINE] 36. Patient. 2011;4(1):11-7. doi: 10.2165/11585530-000000000-00000. Patient-reported outcomes, patient-reported information: from randomized controlled trials to the social web and beyond. Baldwin M, Spong A, Doward L, Gnanasakthy A. Novartis Horsham Research Centre, Horsham, West Sussex, UK. mike.baldwin@novartis.com Internet communication is developing. Social networking sites enable patients to publish and receive communications very easily. Many stakeholders, including patients, are using these media to find new ways to make sense of diseases, to find and discuss treatments, and to give support to patients and their caregivers. We argue for a new definition of patient-reported information (PRI), which differs from the usual patient-reported outcomes (PRO). These new emergent data from the social web have important implications for decision making, at both an individual and a population level. We discuss new emergent technologies that will help aggregate this information and discuss how this will be assessed alongside the use of PROs in randomized controlled trials and how these new emergent data will be one facet of changing the relationship between the various stakeholders in achieving better co-created health. PMCID: PMC3580131 PMID: 21766890 [PubMed - indexed for MEDLINE]

37. Int J Qual Health Care. 2011 Aug;23(4):471-86. doi: 10.1093/intqhc/mzr025. Epub 2011 Jun 8. Can health insurance improve access to quality care for the Indian poor? Michielsen J, Criel B, Devadasan N, Soors W, Wouters E, Meulemans H. Research Centre for Longitudinal and Life Course Studies, Department of Sociology, University of Antwerp, Antwerp, Belgium. joris.michielsen@ua.ac.be PURPOSE: Recently, the Indian government launched health insurance schemes for the poor both to protect them from high health spending and to improve access to high-quality health services. This article aims to review the potentials of health insurance interventions in order to improve access to quality care in India based on experiences of community health insurance schemes. DATA SOURCES: PubMed, Ovid MEDLINE (R), All EBM Reviews, CSA Sociological Abstracts, CSA Social Service Abstracts, EconLit, Science Direct, the ISI Web of Knowledge, Social Science Research Network and databases of research centers were searched up to September 2010. An Internet search was executed. STUDY SELECTION: One thousand hundred and thirty-three papers were assessed for inclusion and exclusion criteria. Twenty-five papers were selected providing information on eight schemes. DATA EXTRACTION: A realist review was performed using Hirschman's exit-voice theory: mechanisms to improve exit strategies (financial assets and infrastructure) and strengthen patient's long voice route (quality management) and short voice route (patient pressure). RESULTS OF DATA SYNTHESIS: All schemes use a mix of measures to improve exit strategies and the long voice route. Most mechanisms are not effective in reality. Schemes that focus on the patients' bargaining position at the patient-provider interface seem to improve access to quality care. CONCLUSION: Top-down health insurance interventions with focus on exit strategies will not work out fully in the Indian context. Government must actively facilitate the potential of CHI schemes to emancipate the target group so that they may transform from mere passive beneficiaries into active participants in their health. PMID: 21659317 [PubMed - indexed for MEDLINE] 38. BMC Public Health. 2011 May 18;11:332. doi: 10.1186/1471-2458-11-332. Public claims about automatic external defibrillators: an online consumer opinions study. Money AG, Barnett J, Kuljis J. Department of Computer Science and Technology, University of Bedfordshire, Luton, Bedfordshire, LU1 3JU, UK. arthur.money@brunel.ac.uk BACKGROUND: Patients are no longer passive recipients of health care, and increasingly engage in health communications outside of the traditional patient and health care professional relationship. As a result, patient opinions and health related judgements are now being informed by a wide range of social, media, and online information sources. Government initiatives recognise self-delivery of health care as a valuable means of responding to the anticipated increased global demand for health resources. Automated External Defibrillators (AEDs), designed for the treatment of Sudden Cardiac Arrest (SCA), have recently become available for 'over the counter' purchase with no need for a prescription. This paper explores the claims and argumentation of lay persons and health care practitioners and professionals relating to these, and how these may impact on the acceptance, adoption and use of these devices within the home context. METHODS: We carry out a thematic content analysis of a novel form of Internet-based data: online consumer opinions of AED devices posted on Amazon.com, the world's largest online retailer. A total of #83 online consumer reviews of home AEDs are analysed. The analysis is both inductive, identifying themes that emerged from the data, exploring the parameters of public debate relating to these devices, and also driven by theory, centring around the parameters that may impact upon the acceptance, adoption and use of these devices within the home as indicated by the Technology Acceptance Model (TAM).

RESULTS: Five high-level themes around which arguments for and against the adoption of home AEDs are identified and considered in the context of TAM. These include opinions relating to device usability, usefulness, cost, emotional implications of device ownership, and individual patient risk status. Emotional implications associated with AED acceptance, adoption and use emerged as a notable factor that is not currently reflected within the existing TAM. CONCLUSIONS: The value, credibility and implications of the findings of this study are considered within the context of existing AED research, and related to technology acceptance theory. From a methodological perspective, this study demonstrates the potential value of online consumer reviews as a novel data source for exploring the parameters of public debate relating to emerging health care technologies. PMCID: PMC3111383 PMID: 21592349 [PubMed - indexed for MEDLINE] 39. Lakartidningen. 2011 Mar 30-Apr 5;108(13):727-9. [Social media change the professional-patient relation. Clarification of ethical guidelines concerning social networking on the Internet is necessary]. [Article in Swedish] Chenik M, Bolinder G, Juth N. Karolinska universitetssjukhuset, Stockholm. marie.chenik@karolinska.se PMID: 21574413 [PubMed - indexed for MEDLINE] 40. Duodecim. 2011;127(7):692-8. [Internet-based cognitive-behavioral therapy in the treatment of psychiatric disorders].[Article in Finnish] Holmberg N, Kähkönen S. Järvenpään sosiaalisairaala, 04480 Haarajoki. Recent years have seen the development of Internet-based cognitive-behavioral therapy, i.e. psychological self-help program mediated via the Internet, the patient being in contact via e-mail with the support person directing the therapy. Internet-based cognitive-behavioral therapy usually consists of psychoeducation, exercises and prevention of the recurrence of symptoms. Modules of the network program are thus the cornerstones of "live" cognitive-behavioral therapy. Self-help provided by Internet-based cognitive-behavioral therapy therapy has been found to be effective especially in the treatment of panic disorder, social phobia and depression, providing an opportunity to extend therapeutic services also to persons beyond the reach of traditional therapy. PMID: 21553503 [PubMed - indexed for MEDLINE] 41. J Health Commun. 2011 Aug;16(7):726-49. doi: 10.1080/10810730.2011.551994. Epub 2011 May 24. Variation in health blog features and elements by gender, occupation, and perspective. Miller EA, Pole A, Bateman C. Department of Gerontology, John W. McCormick School of Policy and Global Studies, University of Massachusetts Boston, Boston, MA 02125, USA. edward.miller@umb.edu This study explores whether there are gender and occupational differences in the health blogosphere and whether there are differences by blogger perspective. Data were derived from content analysis of 951 health blogs identified between June 2007 and May 2008. Results indicate that male, physician bloggers were more likely to have blogs that feature a SiteMeter, sponsorship, and advertising, which also were more prevalent among those blogging from a professional perspective. Women, bloggers in non-health-related employment, and patient/consumer and caregiver bloggers were more likely to blog about disease and disability; men, bloggers in health-related employment, and professional bloggers were more likely to blog about provider experiences, health research/news, and health policy, business, law, and technology. Because the Internet is becoming a primary source of health information, establishing normative guidelines regarding information quality, patient privacy, and conflicts of interest is essential. Future research should build on these findings using national surveys of health bloggers and textual analysis of blog

content. PMID: 21432711 [PubMed - indexed for MEDLINE] 42. J Med Internet Res. 2011 Feb 4;13(1):e16. doi: 10.2196/jmir.1560. Seeking support on facebook: a content analysis of breast cancer groups. Bender JL, Jimenez-Marroquin MC, Jadad AR. Centre for Global eHealth Innovation, University Health Network, Toronto, ON, Canada. jbender@ehealthinnovation.org BACKGROUND: Social network sites have been growing in popularity across broad segments of Internet users, and are a convenient means to exchange information and support. Research on their use for health-related purposes is limited. OBJECTIVE: This study aimed to characterize the purpose, use, and creators of Facebook groups related to breast cancer. METHODS: We searched Facebook (www.Facebook.com) using the term breast cancer. We restricted our analysis to groups that were related to breast cancer, operated in English, and were publicly available. Two of us independently extracted information on the administrator and purpose of the group, as well as the number of user-generated contributions. We developed a coding scheme to guide content analysis. RESULTS: We found 620 breast cancer groups on Facebook containing a total of 1,090,397 members. The groups were created for fundraising (277/620, 44.7%), awareness (236, 38.1%), product or service promotion related to fundraising or awareness (61, 9%), or patient/caregiver support (46, 7%). The awareness groups as a whole contained by far the most members (n = 957,289). The majority of groups (532, 85.8%) had 25 wall posts or fewer. The support oriented groups, 47% (27/57) of which were established by high school or college students, were associated with the greatest number of user-generated contributions. CONCLUSIONS: Facebook groups have become a popular tool for awareness-raising, fundraising, and support-seeking related to breast cancer attracting over one million users. Given their popularity and reach, further research is warranted to explore the implications of social network sites as a health resource across various health conditions, cultures, ages, and socioeconomic groups. PMCID: PMC3221337 PMID: 21371990 [PubMed - indexed for MEDLINE] 43. Pain Manag Nurs. 2011 Mar;12(1):25-32. doi: 10.1016/j.pmn.2009.12.001. Epub 2010 Jul 24. Factors that influence patient advocacy by pain management nurses: results of the American society for pain management nursing survey. Ware LJ, Bruckenthal P, Davis GC, O'Conner-Von SK. University of West Georgia, Carrollton, GA, USA. lware@westga.edu What is the meaning of advocacy, and how does it relate to the nurse who wants patients to experience optimum pain management? This question and the lack of empirical data provided the stimulus for the American Society for Pain Management Nursing (ASPMN) Research Committee to explore ASPMN members' beliefs, knowledge, and skills regarding pain management advocacy activities. The specific aim of the study was to determine the educational needs for and barriers of advocacy for nurses working with patients experiencing pain. An ASPMN Advocacy Survey Instrument was developed to gather data about advocacy activities and interventions. The sample consisted of 188 ASPMN nurses (20% of the membership) who responded via the internet. Study findings revealed that the majority of nurse respondents were active in personal advocacy, serving as guardians of the patient. They confronted physicians as necessary and assisted patients to evaluate their pain management. Regarding making the public aware of pain management-related issues (i.e., public awareness advocacy), the respondents were not as active. Respondents were knowledgeable about pain management and best practices/best evidence, with the exceptions of legislative issues and media training. These two areas need support and educational intervention. Additional areas in need of education and training, as identified by respondents, are social and

political advocacy interventions. "Lack of time" was identified as the barrier to advocacy experienced by the greatest number of nurses. Copyright © 2011 American Society for Pain Management Nursing. Published by Elsevier Inc. All rights reserved. PMID: 21349446 [PubMed - indexed for MEDLINE] 44. BMC Health Serv Res. 2011 Feb 3;11:25. doi: 10.1186/1472-6963-11-25. Patients' perspectives on self-testing of oral anticoagulation therapy: content analysis of patients' internet blogs. Shah SG, Robinson I. Multidisciplinary Assessment of Technology Centre for Healthcare, Department of Information Systems and Computing, Brunel University, Uxbridge, Middlesex UB8 3PH, UK. Sarwar.Shah@brunel.ac.uk BACKGROUND: Patients on oral anticoagulant therapy (OAT) require regular testing of the prothrombin time (PT) and the international normalised ratio (INR) to monitor their blood coagulation level to avoid complications of either over or under coagulation. PT/INR can be tested by a healthcare professional or by the patient. The latter mode of the testing is known as patient self-testing or home testing. The objective of this study was to elicit patients' perspectives and experiences regarding PT/INR self-testing using portable coagulometer devices. METHODS: Internet blog text mining was used to collect 246 blog postings by 108 patients, mainly from the USA and the UK. The content of these qualitative data were analysed using XSight and NVivo software packages. RESULTS: The key themes in relation to self-testing of OAT identified were as follows: Patient benefits reported were time saved, personal control, choice, travel reduction, cheaper testing, and peace of mind. Equipment issues included high costs, reliability, quality, and learning how to use the device. PT/INR issues focused on the frequency of testing, INR fluctuations and individual target (therapeutic) INR level. Other themes noted were INR testing at laboratories, the interactions with healthcare professionals in managing and testing OAT and insurance companies' involvement in acquiring the self-testing equipment. Social issues included the pain and stress of taking and testing for OAT. CONCLUSIONS: Patients' blogs on PT/INR testing provide insightful information that can help in understanding the nature of the experiences and perspectives of patients on self-testing of OAT. The themes identified in this paper highlight the substantial complexities involved in self-testing programmes in the healthcare system. Thus, the issues elicited in this study are very valuable for all stakeholders involved in developing effective self-testing strategies in healthcare that are gaining considerable current momentum particularly for patients with chronic illness. PMCID: PMC3045880 PMID: 21291542 [PubMed - indexed for MEDLINE] 45. J Adv Nurs. 2011 May;67(5):945-53. doi: 10.1111/j.1365-2648.2010.05563.x. Epub 2011 Jan 13. Ethical considerations in the study of online illness narratives: a qualitative review. Heilferty CM. School of Nursing and Allied Health Professions Holy Family University, Philadelphia, Pennsylvania, USA. cheilferty@holyfamily.edu AIM: This aim of the review was to describe differences in ethical approaches to research on Internet communication during illness and to report conclusions drawn relevant to a proposed narrative analysis of parent blogs of childhood illness. BACKGROUND: As the study of the online expression of illness experiences becomes more expansive, discussion of related ethical issues is central to promoting research trustworthiness and rigour. Ethical considerations are central to the patient-provider relationship. DATA SOURCES: The EBSCO Host, CINAHL, Medline, Communication & Mass Media

Complete, and Google Scholar databases were searched from January 1990 toSeptember 2009 using the terms 'Internet research and ethics', 'Internet research, illness and ethics' and 'blog, Internet research and ethics'. Of the 4114 references found, 21 met the inclusion criteria for the review. REVIEW METHODS: The review was designed to be a comprehensive assessment of the concepts analysed and the qualitative research measures taken concerning ethics in Internet research across formats. RESULTS: Three main approaches to ethical conduct in Internet research on illness experiences were found: human subjects, representation and open source approaches. CONCLUSION: The personal and sensitive nature of online illness narratives demand their consideration in health care as 'human subjects' research. The best hope for ethical treatment of author-participants is the creation of a comprehensive plan for addressing any and all potential ethical conflicts that may arise in the collection, analysis and reporting of data, taking into consideration rapid changes in technology. © 2011 Blackwell Publishing Ltd. PMID: 21231955 [PubMed - indexed for MEDLINE] 46. Am J Health Syst Pharm. 2010 Dec 1;67(23):2043-8. doi: 10.2146/ajhp100065. Use of blogs by pharmacists. Clauson KA, Ekins J, Goncz CE. College of Pharmacy, Nova Southeastern University, Fort Lauderdale, FL 33328, USA. clauson@nova.edu PURPOSE: The characteristics of pharmacist blogs were examined. METHODS: Internet search engines, blog aggregators, and blog rolls were used to identify pharmacist blogs. Six categories were developed to evaluate blogs, including practice-based topics, identifying information, positive language, critical language, professionalism, and miscellaneous. The most recent five posts on each pharmacist blog were reviewed. Descriptive statistics were used to characterize the results. RESULTS: A total of 117 blogs were identified, 44 of which were designated as pharmacist blogs. No blogs contained patient-identifying information. Anonymity was maintained by 68.2% of bloggers. Bloggers practiced in community (43.1%) and noncommunity (43.1%) settings. Pharmacists most commonly used positive language to describe the profession (32%), other health care professionals (25%), and patients (25%). The highest rates of critical language were found in descriptions of patients (57%) and other health care professionals (44%). Almost half of pharmacist blogs contained explicit or unprofessional language. Overall, community practitioner blogs were substantially more likely than noncommunity practitioner blogs to use unprofessional and critical language. Twenty-five percent of pharmacist bloggers also maintained a microblog (e.g., Twitter) account. CONCLUSION: A search using Internet search engines, blog aggregators, and blog rolls identified 117 blogs, 44 of which met the study criteria for designation as pharmacist blogs. The majority of pharmacist blogs included some type of discussion of pharmacologic therapies. Pharmacists most commonly used positive language to describe the profession, other health care professionals, and patients. The highest rates of critical language were found in descriptions of patients and other health care professionals. PMID: 21098377 [PubMed - indexed for MEDLINE] 47. Telemed J E Health. 2010 Dec;16(10):1060-6. doi: 10.1089/tmj.2010.0085. Epub 2010 Nov 11. The world of e-patients: A content analysis of online social networks focusing on diseases. Orizio G, Schulz P, Gasparotti C, Caimi L, Gelatti U. Section of Hygiene, Epidemiology, and Public Health, Department of Experimental and Applied Medicine, University of Brescia, Brescia, Italy. gorizio@med.unibs.it OBJECTIVE: as the participatory Web developed to create virtual worlds and communities, health institutions and activists discovered Web 2.0 tools, in particular the creation of health-related online

social networks. To analyze the existing online social networks dedicated to health issues, we performed an active search on the Internet for such Web sites and analyzed their features according to the content analysis method. METHODS: the study was performed in September and October 2009. We analyzed a sample of health social networks for patients, selected using four common search engines. A codebook was elaborated to investigate four areas: general information; technical characteristics and utilities; characteristics of the Web site and contents, both general and related to the online community. RESULTS: the search led to a sample of 41 social networks. Twenty-three Web sites (56.1%) were dedicated to several diseases, the others to one only. Although the majority of the sample (87.8%) provided a way to contact the Web site, only five (12.2%) showed the name of the author or operating organization. Eight Web sites (19.5%) indicated one or more sponsors, and nine (22.0%) named one or more partners. It was often hard to tell whether an institution mentioned was a sponsor or a partner. Five Web sites (12.2%) enabled users to buy health-related products online. Twelve Web sites (29.3%) offered users the chance to search for doctors, and 12 (29.3%) gave therapeutic information. Two Web sites (4.9%) published aggregate statistical data about the patients registered with the social network. CONCLUSIONS: the data reveal the high heterogeneity of health-related social networks and raise interesting considerations on such controversial topics as the quality of online health information, research perspectives, interactivity, and empowerment. In particular, our findings are relevant to criticism regarding the openness and transparency of these Web sites, the use of personal data, and privacy issues. PMID: 21070131 [PubMed - indexed for MEDLINE] 48. Cyberpsychol Behav Soc Netw. 2010 Oct;13(5):483-94. doi: 10.1089/cyber.2009.0351. Epub 2010 Feb 25. Using the Internet to assess perceptions of patients with borderline personality disorder: what do patients want in the DSM-V? Kalapatapu RK, Patil U, Goodman MS. Substance Use Research Center, Unit 120, Columbia University, New York State Psychiatric Institute, 1051 Riverside Drive, New York, NY 10032, USA. kalapat@pi.cpmc.columbia.edu OBJECTIVES: This study was an anonymous Internet survey of individuals currently diagnosed with borderline personality disorder (BPD), where participants gave opinions about BPD criteria in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition-Text Revision (DSM-IV-TR), and suggested modifications for BPD criteria to appear in the DSM-V (5th edition). METHODS: Survey links were posted on 24 websites/Internet blogs that offered advice, education, or treatment of BPD. Demographic and clinical data pertaining to each participant were collected. Free-text responses were analyzed by frequencies of keywords and key phrases. RESULTS: A total of 1,832 responses were downloaded between March 7 and June 6, 2009, and 646 responses were analyzable. Results indicated that the majority of the DSM-IV-TR criteria appeared to capture what participants were experiencing, even though a significant percentage of participants felt that something was missing from the current criteria. A significant percentage of participants felt that BPD should be renamed in the DSM-V; some combination of "emotion(al)" and "(dys)regulation" was most commonly suggested to include in an alternative name. CONCLUSIONS: This Internet study highlighted the enthusiasm of individuals diagnosed with BPD to share their opinions on the DSM criteria with mental-health professionals. A significant percentage of participants in this study felt that BPD should be renamed in the DSM-V. Patient involvement during the DSM-V revision process remains controversial. PMID: 20950172 [PubMed - indexed for MEDLINE] 49. Health Info Libr J. 2010 Sep;27(3):217-26. doi: 10.1111/j.1471-1842.2010.00893.x.

Integrating the hospital library with patient care, teaching and research: model and Web 2.0 tools to create a social and collaborative community of clinical research in a hospital setting. Montano BS, Garcia Carretero R, Varela Entrecanales M, Pozuelo PM. Health Science Library, Hospital Universitario de Móstoles, Madrid, Spain. bsanjose.hmtl@salud.madrid.org BACKGROUND: Research in hospital settings faces several difficulties. Information technologies and certain Web 2.0 tools may provide new models to tackle these problems, allowing for a collaborative approach and bridging the gap between clinical practice, teaching and research. OBJECTIVES: We aim to gather a community of researchers involved in the development of a network of learning and investigation resources in a hospital setting. METHODS: A multi-disciplinary work group analysed the needs of the research community. We studied the opportunities provided by Web 2.0 tools and finally we defined the spaces that would be developed, describing their elements, members and different access levels. MODEL DESCRIPTION: WIKINVESTIGACION is a collaborative web space with the aim of integrating the management of all the hospital's teaching and research resources. It is composed of five spaces, with different access privileges. The spaces are: Research Group Space 'wiki for each individual research group', Learning Resources Centre devoted to the Library, News Space, Forum and Repositories. CONCLUSIONS: The Internet, and most notably the Web 2.0 movement, is introducing some overwhelming changes in our society. Research and teaching in the hospitalsetting will join this current and take advantage of these tools to socialise and improve knowledge management. PMID: 20712716 [PubMed - indexed for MEDLINE] 50. Int J Clin Pract Suppl. 2010 Feb;(166):41-6. Doi: 10.1111/j.1742-1241.2009.02277.x. Internet and information technology use in treatment of diabetes. Kaufman N. UCLA School of Medicine, Los Angeles, CA 90025, USA. nkaufman@dpshealth.com This chapter contains clinical studies and reviews of the state-of-the-art regarding how information technology can help improve outcomes for patients with diabetes through enhanced education and support. With the increasing sophistication of diabetes treatment protocols and diabetes-related devices this new modality offers a remarkable opportunity for clinicians and patients. For the first time, with online tools clinicians are in a position to have a major impact on diabetes outcomes by providing robust and affordable just-in-time support to large numbers of patients who want to improve their diabetes outcomes through enhanced self-management of the complex behaviours so essential for good outcomes. Patients with diabetes often need a complex set of services and support ranging from glucose monitoring, insulin and other medication management, psychotherapy and social support, to physical activity promotion, nutrition counselling and more. Integrating these supports into a patient's therapeutic regimen presents challenges that need to be addressed through a variety of strategies. Patient self-management of diabetes enabled by information technology is becoming an important factor in the way providers deliver healthcare. Approaches using information technology to support clinical services are being dramatically altered by the confluence of several trends. * Patients want an active role in managing their own health and a collaborative relationship with their healthcare providers. * Widespread, low-cost internet access is erasing existing geographic, economic and demographic barriers to obtaining health information online, and with advanced Web 2.0 technologies high levels of interactivity can engage the patient. * Clinicians and researchers now have a deeper understanding of how people learn and respond online, and that knowledge can be crafted into solutions that produce effective, long-term behaviour change. Technology enabled approaches that show great promise to improve outcomes use new models of service provision in which technology enabled self-management support (SMS) provides patients with * just-in-time delivery of tailored messages and experience that speak to each person based on their unique characteristics, their performance on key behaviours and their needs at that moment in time; * ways to easily and accurately keep track of their performance and use that knowledge to plan and implement new approaches to reaching their goals; * ways to link directly to family and

friends for critical support, and to link to their many providers to help integrate medical care with everyday life. Online tools can extend health practices and provide this support through cost-effective programmes that help clinicians guide their patients to better manage their diabetes. The best internet self-management education and support programmes are rich in pertinent content, provide engaging interactive elements, and offer a tailored, personalised learning experience. They contain self-assessment tools and ways for the individual to monitor performance and changes in biological measurements such as blood sugar, insulin dosage, physical activity, weight, blood pressure and mood. The patient can access their information, input their data, and receive support 24 h a day - at a time and place most convenient for them, and not limited to clinicians' office hours. Web-based learning and support technology benefits both clinician and patient; patients learn to overcome barriers and to self-document activities and interactions, permitting clinician review and feedback at any time. In addition to automating much of the educational content, this time shifting element is one of the keys to making the process efficient and low cost. The ability to perform an automated review of the patient's activities and performance also provides the clinician with a valuable tool that increases both effectiveness and efficiency. As with online intervention, a 'virtual coach' can provide individualised guidance and supportbased on readily available analyses of each patient's characteristics and performance. In addition, the clinician can communicate frequently and efficiently, offering personalised email support to each patient without requiring in-person meetings, as well as monitor 'virtual support groups' wherepatients interact with others online via informational chat rooms and blogs. By incorporating web-based patient self-management and support into traditional treatment methods, one clinician can effectively support many patients Рone patient at a time. PMID: 20377663 [PubMed - indexed for MEDLINE] 51. Bull Cancer. 2010 Oct;97(10):1133-6. doi: 10.1684/bdc.2010.1160. [Patients and the Web].[Article in French] Cluzeau T, Mounier N. CHU de Nice, h̫pital Archet, Service d'oncoh̩matologie, 151, route de Saint-Antoine-de-Ginesti̬re, 06200 Nice, France. cluzeau.thomas@gmail.com In recent years, Internet has become an indispensable tool for all types of information. Its importance has increased in medicine and particularly in human malignancies. The data issued by the Internet are many and varied sources ranging from official websites to patient's blogs. HIV infection is an infection highly publicized in recent years, we take the case of Hodgkin's disease associated with HIV to compare data from the Internet and scientific articles. The information from the Internet is mostly good but not updated and erroneous data are regularly found. This confirms that the consultation by a specialist doctor referral should remain the main source of information for the patient. PMID: 20663740 [PubMed - indexed for MEDLINE] 52. BMC Med Educ. 2010 Jun 24;10:50. doi: 10.1186/1472-6920-10-50. Medical student attitudes toward video games and related new media technologies in medical education. Kron FW, Gjerde CL, Sen A, Fetters MD. 1Medical Cyberworlds, Inc., 3895 Swoboda Road, Verona 53590, USA. BACKGROUND: Studies in K-12 and college students show that their learning preferences have been strongly shaped by new media technologies like video games, virtual reality environments, the Internet, and social networks. However, there is no known research on medical students' game experiences or attitudes towards new media technologies in medical education. This investigation seeks to elucidate medical student experiences and attitudes, to see whether they warrant the development of new media teaching methods in medicine. METHODS: Medical students from two American universities participated. An anonymous, 30-item, cross-sectional survey addressed demographics, game play experience and attitudes on using

new media technologies in medical education. Statistical analysis identified: 1) demographic characteristics; 2) differences between the two universities; 3) how video game play differs across gender, age, degree program and familiarity with computers; and 4) characteristics of students who play most frequently. RESULTS: 217 medical students participated. About half were female (53%). Respondents liked the idea of using technology to enhance healthcare education (98%), felt that education should make better use of new media technologies (96%), and believed that video games can have educational value (80%). A majority (77%) would use a multiplayer online healthcare simulation on their own time, provided that it helped them to accomplish an important goal. Men and women agreed that they were most inclined to use multiplayer simulations if they were fun (97%), and if they helped to develop skill in patient interactions (90%). However, there was significant gender dissonance over types of favorite games, the educational value of video games, and the desire to participate in games thatrealistically replicated the experience of clinical practice. CONCLUSIONS: Overall, medical student respondents, including many who do not play video games, held highly favorable views about the use of video games and related new media technology in medical education. Significant gender differences in game play experience and attitudes may represent male video game design bias that stresses male cognitive aptitudes; medical educators hoping to create serious games that will appeal to both men and women must avoid this. PMCID: PMC2908629 PMID: 20576125 [PubMed - indexed for MEDLINE] 53. Stud Health Technol Inform. 2010;156:13-8. Using collective intelligence to fine-tune public health policy. Marsh A, Carroll D, Foggie R. University of Westminster, London, UK. am@hoip.eu The European Union Future Internet Assembly, the roadmap for the Web heading towards semantic interoperability and building on the UK's adoption of the Internet and social media are accelerating the development of Web 3.0. A number of health portals are opening, some with facilities for the capture of Patient Based Records. Collective Intelligence will be generated that, applied to health, has potential to support Public Health policy. By using the Internet, millions of people in the course of their daily activities contribute to uncertified data stores, some explicitly collaborating to create collective knowledge bases, some contributing implicitly through the patterns of their choices and actions. An application of soft computing, called Collective Health Intelligence, that reasons uncertified and certified data could enhance the social pool of existing health knowledge available to the public health agencies. Collective Health Intelligence could be used to complement national programmes by employing innovative sampling techniques, cost-effectively generating anonymous data trends that would quantify policy, indicate epidemiological effects and supply metrics to test policy efficacy. PMID: 20543334 [PubMed - indexed for MEDLINE] 54. J Med Internet Res. 2010 May 28;12(2):e17. doi: 10.2196/jmir.1267. Patient and parent views on a Web 2.0 Diabetes Portal--the management tool, the generator, and the gatekeeper: qualitative study. Nordfeldt S, Hanberger L, Berterö C. Center for Medical Technology Assessment, Department of Medicine and Health Sciences, Linköping University, Linköping, Sweden. sam.nordfeldt@liu.se BACKGROUND: The Internet has undergone rapid development, with significant impact on social life and on modes of communication. Modern management of type 1 diabetes requires that patients have access to continuous support and learning opportunities. Although Web 2.0 resources can provide this support, few pediatric clinics offer it as part of routine diabetes care. OBJECTIVE: We aimed to explore patients' and parents' attitudes toward a local Web 2.0 portal

tailored to young patients with type 1 diabetes and their parents, with social networking tools such as message boards and blogs, locally produced self-care and treatment information, and interactive pedagogic devices. Opportunities and obstacles to the implementation of Web 2.0 applications in clinical practice were sought. METHODS: Participants were 16 mothers, 3 fathers, and 5 young patients (ages 11-18 years; median 14 years) who each wrote an essay on their experience using the portal, irrespective of frequency and/or their success in using it. Two main guiding questions were asked. A qualitative content analysis was conducted of the essays as a whole. RESULTS: Three main categories of portal users' attitudes were found; we named them "the management tool," "the generator," and "the gatekeeper." One category was related to the management tool functionality of the portal, and a wide range of concrete examples was found regarding useful facts and updates. Being enabled to search when necessary and find reliable information provided by local clinicians was regarded as a great advantage, facilitating a feeling of security and being in control. Finding answers to difficult-to-ask questions, questions portal users did not know they had before, and questions focusing on sensitive areas such as anxiety and fear, was also an important feature. A second category was related to the generator function in that visiting the portal could generate more information than expected, which could lead to increased use. Active message boards and chat rooms were found to have great value for enhancing mediation of third party peer-to-peer information. A certain level of active users from peer families and visible signs of their activity were considered necessary to attract returning users. A third category was related to the gatekeeper function of the password requirement, which created various access problems. This and other unsuccessful experiences caused users to drop the portal. A largely open portal was suggested to enhance use by those associated with the child with diabetes, such as school personnel, relatives, friends and others, and also by young users somewhat unwilling to self-identify with the disease. CONCLUSIONS: Web 2.0 services have great potential for supporting parents and patients with type 1 diabetes by enhancing their information retrieval and disease management. Well-developed services, such as this one, may generate continued use and should, therefore, be carefully maintained and updated by health care professionals who are alert and active on the site with new information and updates. Login procedures should be simple and minimized as much as possible. The education of clinical practitioners regarding the use of Web 2.0 resources needs more attention. PMCID: PMC2956228 PMID: 20511179 [PubMed - indexed for MEDLINE] 55. Facial Plast Surg. 2010 Feb;26(1):39-44. doi: 10.1055/s-0029-1245063. Epub 2010 Jan 29. Exponential growth using the internet and your web site. Baxter R. Surgeon's Advisor, Miami Beach, Florida, USA. rbaxter@surgeonsadvisor.com Developing a successful Internet strategy can help attract new patients and take your practice to the next level. Today, as the Internet has evolved, it is more important than ever, especially as your competitors are likely pursuing more aggressive strategies themselves. There are several important components involved, and maximizing your efforts with each can help create a comprehensive and sound strategy that achieves significant results. Behind such a strategy you will find a strong focus in many areas, including Web site development, search engine optimization, link building, content creation, blogs, video, choosing a vendor, patient conversion, Web 2.0, social networking, reputation management, and more. Understanding each of these areas, and the efforts required to tackle each effectively, can help you ensure that your own Internet strategy is functioning well and reaching its true potential. Thieme Medical Publishers. PMID: 20119902 [PubMed - indexed for MEDLINE]

56. Telemed J E Health. 2010 Jan-Feb;16(1):69-79. doi: 10.1089/tmj.2009.0079. Telehealth on advanced networks. Wilson LS, Stevenson DR, Cregan P. CSIRO ICT Centre, Sydney, NSW, Australia. laurie.wilson@csiro.au We address advanced Internet for complex telehealth applications by reviewing four hospital-based broadband telehealth projects and identifying common threads. These projects were conducted in Australia under a 6-year research project on broadband Internet applications. Each project addressed specific clinical needs and its development was guided by the clinicians involved. Each project was trialed in the field and evaluated against the initial requirements. The four projects covered remote management of a resuscitation team in a district hospital, remote guidance and interpretation of echocardiography, virtual-reality-based instructor-student surgical training, and postoperative outpatient consultations following pediatric surgery. Each was characterized by a high level of interpersonal communication, a high level of clinical expertise, and multiple participants. Each made use of multiple high-quality video and audio links and shared real-time access to clinical data. Four common threads were observed. Each application provided a high level of usability and task focus because the design and use of broadband capability was aimed directly to meet the clinicians' needs. Each used the media quality available over broadband to convey words, gestures, body movements, and facial expressions to support communication and a sense of presence among the participants. Each required a complex information space shared among the participants, including real-time access to stored patient data and real-time interactive access to the patients themselves. Finally, each application supported the social and organizational aspects of their healthcare focus, creating and maintaining relationships between the various participants, and this was done by placing the telehealth application into a wider functioning clinical context. These findings provide evidence for a significantly enhanced role for appropriate telemedicine systems running on advanced networks, in a wider range of clinical applications, more deeply integrated into healthcare systems.PMID: 20064055 [PubMed - indexed for MEDLINE]