#web2salute50 Abstracts of E-patient1. Rev Med Liege. 2013 Feb;68(2):74-8.[Reticence to vaccination: an approach to the ph...
international online diabetes social network with insulin-dependent diabetes mellitus were polledthrough a software applic...
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 ex...
continuous symptom dynamics. Subtracting the trends from the original data revealed randomfluctuations in symptom severity...
quality of life. Its aetiology is largely unknown and the identification of effective managementstrategies remains far fro...
Birmingham, Childrens of Alabama, Birmingham, AL, USA. naftel@uab.eduOBJECT: The Internet and social media are powerful di...
Reflective practice as a tool to teach digital professionalism.Kung JW, Eisenberg RL, Slanetz PJ.Department of Radiology, ...
PMID: 22959332 [PubMed - in process]14. Semin Cutan Med Surg. 2012 Sep;31(3):183-90. doi: 10.1016/j.sder.2012.06.002.Derma...
to the centre, and all medical examinations and tests done for the diagnosis and/or during follow up.Each participating ce...
an online support community for alcoholism using content analysis. Our sample consisted of 493forum messages, 423 journal ...
According to the National Research Corporation, 1 in 5 Americans use social media sites to obtainhealthcare information. P...
allows nurses to understand the experience of the patient through their own words and accounts.This study provides a found...
25. J Med Internet Res. 2012 Feb 9;14(1):e27. doi: 10.2196/jmir.1999.Online availability and safety of drugs in shortage: ...
remission. For UC, the mean simple clinical colitis activity index (SCCAI) was 3.6 (SD 2.8), with937 (42.9%) in remission....
Twitter, and YouTube), and evaluated currently available applications for use by IBD patients andproviders on mobile phone...
31. Tumori. 2011 Jul-Aug;97(4):510-6. doi: 10.1700/950.10406.National Cancer Information Service in Italy: an information ...
May 24.The decision to access patient information from a social media site: what would you do?Jent JF, Eaton CK, Merrick M...
HD and the PD group responses in the following factors: provision of written information(P=0.048), fitting modality with l...
37. Int J Qual Health Care. 2011 Aug;23(4):471-86. doi: 10.1093/intqhc/mzr025. Epub 2011 Jun 8.Can health insurance improv...
RESULTS: Five high-level themes around which arguments for and against the adoption of homeAEDs are identified and conside...
content.PMID: 21432711 [PubMed - indexed for MEDLINE]42. J Med Internet Res. 2011 Feb 4;13(1):e16. doi: 10.2196/jmir.1560....
political advocacy interventions. "Lack of time" was identified as the barrier to advocacyexperienced by the greatest numb...
Complete, and Google Scholar databases were searched from January 1990 toSeptember 2009 usingthe terms Internet research a...
social networks. To analyze the existing online social networks dedicated to health issues, weperformed an active search o...
Integrating the hospital library with patient care, teaching and research: model and Web 2.0tools to create a social and c...
Fattori - 50 abstracts of e patient. In collaborazione con Monica Daghio
Fattori - 50 abstracts of e patient. In collaborazione con Monica Daghio
Fattori - 50 abstracts of e patient. In collaborazione con Monica Daghio
Fattori - 50 abstracts of e patient. In collaborazione con Monica Daghio
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Fattori - 50 abstracts of e patient. In collaborazione con Monica Daghio

  1. 1. #web2salute50 Abstracts of E-patient1. 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 ofinfectious diseases leads to greater attention to side effects of vaccines; on the other hand, the socialevolution leads patients to search for zero risk in different aspects of life. Suspiciousness towardsthe State and the influence of media emphasizing potential deleterious effects of each vaccine areadditional phenomena explaining peoples hesitations. Anti-vaccination movements using Internetto disseminate their ideas are also responsible. Secondly, the article aims at assessing the publicopinion about vaccination. It is still predominantly positive, even if questions remain. A typologyof four patients profiles based on statistical results is proposed. Finally, after having examined themedical doctors opinion concerning vaccination, this article ends with some pieces of advice onhow 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 thereare nearly a billion users on 3G and 4G networks worldwide. Nearly 60% of the U.S. populationuses smart phones to access the internet, and smart phone sales now surpass those of desktop andlaptop computers. The speed of wireless communication technology on 3G and 4G networks andthe 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. Thesetechnologies provide an unprecedented opportunity for physicians to continually access data thatcan be used to detect issues before symptoms occur or to have definitive data when symptoms arepresent. The technology also greatly empowers and enables the possibility for unprecedentedpatient participation in their own medical education and health status as well as that of their socialnetwork. As patient advocates, physicians and particularly cardiac electrophysiologists shouldembrace the future and promise of wireless ECG recording, a technology solution that can trulyscale 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.eduComment in JAMA Intern Med. 2013 Mar 11;173(5):352-3. JAMA Intern Med. 2013 Mar11;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
  2. 2. international online diabetes social network with insulin-dependent diabetes mellitus were polledthrough a software application ("app"). Aggregate results were returned to participants throughnetwork channels.DESIGN: The study period was from March 2011 through April 2012, during which timeretrospective reports about experiences with hypoglycemia and related harms were collected fromparticipants using the app.SETTING: The study was undertaken within the TuDiabetes.org international online diabetessocial network.PARTICIPANTS: Eligibility criteria included TuDiabetes membership, age 13 years or older, aself-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 "goinglow" (having a low glucose value in the past 2 weeks) and episodes of severe hypoglycemia (in thepast 12 months), and, for respondents reporting recent and/or severe hypoglycemia, lifetimeexperience of vehicle crashes or severe medical injury, daily debilitating worry, and withdrawalfrom driving, exercise, sex, and going outside of the home to avoid hypoglycemia andconsequences. 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. Harmswere common, including daily debilitating worry (45.8%), vehicle crash or injury (15.0%), andwithdrawal from exercise, driving, leaving home, and having sex (54.0%, 37.4%, 24.8%, and22.7%, respectively). Of all respondents, 54.2% reported multiple harms, the risks for which werehighest (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 onlinediabetes social network enables characterization of patient-centered harms in a community sampleand 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.eduNew healthcare models have been developed to keep up with the dynamic changes of the Internetrevolution through social media. Physicians are taking this new technology and enhancing theircommunication with patients as well among the healthcare community including distributing publichealth information via Twitter and Facebook. However, a physicians freedom of speech via Twitterand blogs can reach millions instantly, causing irreversible harm. U.S. licensing authorities havereported numerous violations of professionalism by physicians resulting indisciplinary actions negatively impacting their careers. Federation of State Medical Boardsguidelines advise that patient privacy must be protected at all times on social networking sites. Inaddition, employers and residency programsare also now searching Facebook and other social networking sites before hiring applicants. Thereare many benefits of social media; however, professionalism, patient privacy, and boundaries needto be maintained.PMID: 23373164 [PubMed - indexed for MEDLINE]
  3. 3. 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 qualityhealthcare.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.ukRecent years have seen increasing interest in patient-centred care and calls it focus on improvingthe patient experience. At the same time, a growing number of patients are using the internet todescribe their experiences of healthcare. Webelieve 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-centredcare agenda and provide novel qualityof care data. We describe this concept as a cloud of patient experience. In this commentary, weoutline the ways in which the collection and aggregation of patients descriptions of theirexperiences on the internet could be used to detect poor clinical care. Over time, such an approachcould also identify excellence and allow it to be built on. We suggest using the techniques of naturallanguage processing and sentiment analysis to transform unstructured descriptions of patientexperience on the internet into usable measures of healthcare performance. We consider the varioussources of information that could be used, the limitations of the approach and discuss whether thesenew 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 Parkinsons disease using self-reported symptom datafrom an Internet social network.Little M, Wicks P, Vaughan T, Pentland A.Human Dynamics Group, Media Lab, Massachusetts Institute of Technology, Cambridge, MA02139, United States. maxl@mit.edu.BACKGROUND: Parkinsons disease (PD) is an incurable neurological disease with approximately0.3% prevalence. The hallmark symptom is gradual movement deterioration. Current scientificconsensus about disease progression holds that symptoms will worsen smoothly over time unlesstreated. 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 thedisease 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 ascarcity of objective clinical information about symptom dynamics at intervals shorter than 3months stretching over several years, but Internet-based patient self-report platforms may changethis.OBJECTIVE: To assess the clinical value of online self-reported PD symptom data recorded byusers of the health-focused Internet social research platform PatientsLikeMe (PLM), in whichpatients quantify their symptoms on a regular basis on a subset of the Unified Parkinsons DiseaseRatings Scale (UPDRS). By analyzing this data, we aim for a scientific window on the nature ofsymptom dynamics for assessment intervals shorter than 3 months over durations of several years.METHODS: Online self-reported data was validated against the gold standard Parkinsons DiseaseData and Organizing Center (PD-DOC) database, containing clinical symptom data at intervalsgreater than 3 months. The data were compared visually using quantile-quantile plots, andnumerically using the Kolmogorov-Smirnov test. By using a simple piecewise linear trendestimation algorithm, the PLM data was smoothed to separate random fluctuations from
  4. 4. continuous symptom dynamics. Subtracting the trends from the original data revealed randomfluctuations in symptom severity. The average magnitude of fluctuations versus time sincediagnosis was modeled by using a gamma generalized linear model.RESULTS: Distributions of ages at diagnosis and UPDRS in the PLM and PD-DOC databases werebroadly consistent. The PLM patients were systematically younger than the PD-DOC patients andshowed 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 afterdiagnosis. This fluctuation exceeds the estimated minimal and moderate clinically importantdifferences, respectively. Not all patients conformed to the current clinical picture of gradual,smooth changes: many patients had regimes where symptom severity varied in an unpredictablemanner, or underwent large rapid changes in an otherwise more stable progression.CONCLUSIONS: This information about short-term PD symptom dynamics contributes newscientific understanding about the disease progression, currently very costly to obtain without self-administered Internet-based reporting. This understanding should have implications for theoptimization of clinical trials into new treatments and for the choice of treatment decisiontimescales.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,YamagataUniversity, 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 hasarisen 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 interactiveform of social media, and has become an important online tool for patients. This medium is nowconsidered to play an important role in the modern social community of online, "wired" cancerpatients.RESULTS: Fifty-one highly influential "power accounts" belonging to cancer patients wereextracted from a dataset of 731 Twitter accounts with cancer terminology in their profiles. Inaccordance with previously established methodology, "power accounts" were defined as thoseTwitter accounts with 500 or more followers. We extracted data on the cancerpatient (female) withthe most followers to study the specific relationships that existed between the user and herfollowers, and found that the majority of the examined tweets focused on greetings, treatmentdiscussions, and other instances of psychological support. These findings went against ourhypothesis that cancer patients tweets would becentered on the dissemination of medical information and similar "newsy" details.CONCLUSIONS: At present, there exists a rapidly evolving network of cancer patients engaged ininformation exchange via Twitter. This network is valuable in the sharing of psychological supportamong the cancer community.PMCID: PMC3599295PMID: 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 criticalanalysis of patient-centred data.Sprake EF, Grant VA, Corfe BM.Molecular Gastroenterology Research Group, Academic Unit of Surgical Oncology, Department ofOncology, University of Sheffield, Sheffield, UK. Irritable bowel syndrome (IBS) is a chronic anddebilitating functional disorder of the gastrointestinal tract with serious and detrimental impacts on
  5. 5. quality of life. Its aetiology is largely unknown and the identification of effective managementstrategies remains far from complete. This paper first reports, a case of a 41-year-old woman IBSsufferer who reported significant symptom improvements with high-dose vitamin D3supplementation. The sufferer identified a substantial body of patient data surrounding thispotential therapy on social media sites, and this paper, therefore, also reports the findings from asystematic analysis of patient-centred, internet-based data surrounding this phenomenon. Data from37 IBS sufferers commenting on the effect of vitamin D supplementation on their condition werelocated; approximately 70% of these reported that high-dose supplementation improved their IBSsymptoms. A randomised controlled trial into the effect of vitamin D supplementation on IBSsymptomatology 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 2012Apr 17.ADHD knowledge, perceptions, and information sources: perspectives from a communitysample 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.eduPURPOSE: The chronic illness model advocates for psychoeducation within a collaborative caremodel to enhance outcomes. To inform psychoeducational approaches for ADHD, this studydescribes parent and adolescent knowledge,perceptions, and information sources and explores how these vary by sociodemographiccharacteristics, ADHD risk, and past child mental health service use.METHODS: Parents and adolescents were assessed 7.7 years after initial school district screeningfor 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. Surveyquestions assessed ADHD knowledge, perceptions, and cues to action and elicited used andpreferred information sources. Multiple logistic regression was used to determine potentialindependent predictors of ADHD knowledge. McNemar tests compared information sourceutilization against preference.RESULTS: Despite relatively high self-rated ADHD familiarity, misperceptions among parents andadolescents were common, including a sugar etiology (25% and 27%, respectively) and medicationoveruse (85% and 67%, respectively). African American respondents expressed less ADHDawareness and greater belief in sugar etiology than Caucasians. Parents used a wide range of ADHDinformation sources, whereas adolescents relied on social network members and teachers/school.However, parents and adolescents expressed similar strong preferences for the Internet (49% and51%, respectively) and doctor (40% and 27%, respectively) as ADHD information sources.CONCLUSIONS: Culturally appropriate psychoeducational strategies are needed that combinedoctor-provided ADHD information with reputable Internet sources. Despite time limitations duringpatient visits, both parents and teens place high priority on receiving information from their doctor.Copyright © 2012 Society for Adolescent Health and Medicine. Published byElsevier 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 Oct23.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
  6. 6. Birmingham, Childrens of Alabama, Birmingham, AL, USA. naftel@uab.eduOBJECT: The Internet and social media are powerful disseminators of medical information,providing new portals for patient care. The authors of this study evaluated current technologyhardware, Internet, and social media use and theirsocioeconomic relationships among caregivers of children with hydrocephalus.METHODS: A written survey was completed in the neurosurgical clinics at the University ofAlabama at Birmingham by 300 parents of children with shunted hydrocephalus between October26, 2010, and July 26, 2011.RESULTS: Computer use (94.6%), Internet use (91.7%), smartphone use (56.9%), and Internetresearch on hydrocephalus (81.9%) were prevalent. However, for each ofthese four utilizationsthere 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), andlower level of education (p = 0.001, 0.002, < 0.0001, and 0.001, respectively). Personal use ofsocial 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 hydrocephaluseducation on the Internet, caregivers chose information websites such as Wikipedia or theHydrocephalus Association as preferred platforms; these preferences were followed by use of socialmedia websites. Facebook and YouTube were the preferred social media platforms for personal andhydrocephalus-related use. Parents indicate moderate skepticism about the trustworthiness of theInternet; only 21.7% always trust the online sources. Most parents (89.8%) say that they wouldvisit neurosurgeon-recommended websites. Of Internet-using caregivers, 28.6% use the Internet orsocial media to find hydrocephalus support groups, and 34.8% have used the Internet tocommunicate with other caregivers who have children withsimilar conditions.CONCLUSIONS: Technology hardware, the Internet, and social media are widely used with someskepticism by parents of children with shunted hydrocephalus. Caregivers are interested inphysician-recommended Internet resources. Socioeconomic factors including race, income, andlevel of education reveal a disparity in access to some of these resources, although all groups haverelatively high use. Unlike typical technology use, social media use is breaking down the digitaldivide 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.caIt has been argued recently that the antipsychiatry movement has transmogrified into a patient-based consumer movement. Instead, the author suggests, various activities and ideas thatlegitimately could be described as antipsychiatry, or, at least, as highly critical of psychiatry, areburgeoning. These activities include the works of intellectual scholars, such as disgruntledpsychiatrists, critical social scientists, and humanistic psychologists; the analyses and writings ofhigh-profile and prominent investigative journalists; blogs, Web sites, and social media thatcommunicate a disdain for psychiatry among citizen Internet activists; and the ongoing, well-documented critique of followers of Scientology. The author concludes that a renewed yetamorphous critique of psychiatry is emerging, even though the tarnished name of antipsychiatry isstudiously avoided by all. This critique may intensify, given the likely media and public interestsurrounding 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.
  7. 7. 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.eduRATIONALE AND OBJECTIVES: Digital professionalism is increasingly being integrated intopostgraduate medical education. We developed a small-group, reflective practice-based sessionincorporating radiology-specific cases to heighten residents awareness about digitalprofessionalism.MATERIALS AND METHODS: Case-based, radiology-specific scenarios were created for asmall-group, reflective practice-based session on digital professionalism. Anonymous pre- andpostsession surveys evaluating residents use of social media and their thoughts about the sessionwere 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 onFacebook; and 8% (2/25) posting somethingunprofessional themselves. Of the 21 residents who attended the session, 13 (62%) responded to thepostsession survey. Residents reported that the session added to their understanding ofprofessionalism 3.92, 95% CI (3.57-4.27). As a result of the session, residents stated that they weremore 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 itrelates to patient care 4.00, 95% CI (3.66-4.34).CONCLUSION: Residents favorably viewed the reflective case-based session on digitalprofessionalism as a means to be more aware of ways to avoid unprofessional interactions on theinternet. Our results suggest that such reflective sessions are an effective method to educateresidents 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 Childrens Research Hospital, Memphis, 38105 TN, USA.catherine.lam@stjude.orgOBJECTIVE: Little is known about Internet resources for adolescent patients. This study assessedthe 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 andreadability 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 apilot adolescent-specificity measure.RESULTS: Of 400 websites assessed, 56 (14%) met inclusion criteria. Websites mean quality wasfair (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 socialmedia. More than 60% received over 50,000 visits in the past month. Only 12.5% includedadolescent-specific content. Of the 10 websites ranked highest for quality, only one achieved bothreadability targets and adolescent-specific content.CONCLUSIONS: Although some patient-oriented websites on osteosarcoma are of acceptablequality, most failed readability targets, and few appeared to address adolescents.PRACTICE IMPLICATIONS: Better awareness of Internet health resources and social media foradolescents with cancer is needed to address gaps, promote health literacy and facilitate patient-provider communication.Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.
  8. 8. 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 Georges University School of Medicine, Grenada.Both patients and medical professionals are increasingly accessing the Internet for healthinformation. Todays Web enables features that facilitate information sharing in a social andcollaborative manner, thus transforming the way we access data and communicate with our patientsand colleagues. The visual nature of the field of dermatology lends itself to the use of the Internetfor reference and educational purposes. To generate a list of Web sites commonly used by academicdermatologists, the authors polled the Accreditation Council for Graduate Medical EducationDermatology Program Directors for their top 3 Web resources. The purpose of this article is toidentify resources used by dermatologists as well as patients and examine factors that can influenceInternet search results. Concerns regarding professionalism in the era of social media are alsoexplored. As the volume of health information on the Internet continues to increase, it is essentialfor physicians to be aware of what is available in cyberspace. Reference and learning tools for thephysician, learning and support tools for the patient, and physician Internet presence are key aspectsof 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.netPatient use of social media platforms for accessing medical information has accelerated in parallelwith overall use of the Internet. Dermatologists must keep pace with our patients use of these mediathrough either passive or activemeans are outlined in detail for 4 specific social media outlets. A 5-step plan for active engagementin social media applications is presented. Implications for medical professionalism, HealthInsurance Portability and Accountability Actcompliance, 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 Frenchnetwork.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.frBACKGROUND: Interstitial lung diseases (ILDs) in children represent a heterogeneous group ofrare respiratory disorders that affect the lung parenchyma. After the launch of the French ReferenceCentre for Rare Lung Diseases (RespiRare®), we created a national network and a web-linkeddatabase to collect data on pediatric ILD.METHODS: Since 2008, the database has been set up in all RespiRare® centres. After patientsparents oral consent is obtained, physicians enter the data of children with ILD: identity, social dataand environmental data; specific aetiological diagnosis of the ILD if known, genetics, patient visits
  9. 9. 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 studiesrequire mutual agreement. Physicians may use the system as a daily aid for patient care through aweb-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 atdiagnosis 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 alveolarproteinosis, haemosiderosis, and sarcoidosis represent almost half of the diagnoses. Median lengthof follow-up is 2.9 years [0-17.2].CONCLUSIONS: We introduce here the French network and the largest national database inpediatric ILDs. The diagnosis spectrum and the estimated incidence are consistent with otherEuropean databases. An important challenge will be to reduce the proportion of unclassified ILDsby a standardized diagnosis work-up. This database is a great opportunity to improve patient careand disease pathogenesis knowledge. A European network including physicians and Europeanfoundations is now emerging with the initial aim of devising a simplified Europeandatabase/register as a first step to larger European studies.PMCID: PMC3458912PMID: 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 andAccountability Act (HIPAA) Privacy Rule seeks balance by protecting the privacy of patientshealth information and assuring that this information is available to those who need it to providehealth care. Though federal and state governments have created laws and policies to safeguardpatient privacy and confidentiality, the laws are inadequate against the rapid and innovative use ofelectronic health websites. As Internet use broadens access to information, health professionalsmust be aware that this information is not always secure. We must identify and reflect on medicalethics 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.eduBACKGROUND: Expressing emotion in online support communities is an important aspect ofenabling e-patients to connect with each other and expand their social resources. Indirectly itincreases the amount of support for coping with health issues. Exploring the supportive interactionpatterns in online health social networking would help us better understand how technology featuresimpacts user behavior in this context.OBJECTIVE: To build on previous research that identified different types of social support inonline support communities by delving into patterns of supportive behavior across multiplecomputer-mediated communication formats. Each format combines different architectural elements,affecting the resulting social spaces. Our research question compared communication acrossdifferent formats of text-based computer-mediated communication provided on the MedHelp.orghealth 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
  10. 10. an online support community for alcoholism using content analysis. Our sample consisted of 493forum messages, 423 journal messages, and 1180 notes.RESULTS: Nurturant support types occurred frequently among messages offering support (forumcomments: 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 amongmessages requesting support. Of all the nurturing supports, emotional (ie, encouragement) appearedmost 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 ofsupport to their needs in becoming sober, such as provision of encouragement, understanding, andempathy to one another.CONCLUSIONS: The computer-mediated communication format may have the greatest influenceon the supportive interactions because of characteristics such as audience reach and access. Otherfactors include perception of community versus personal space or purpose of communication. Theseresults 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.nlBACKGROUND: Patients increasingly use social media to communicate. Their stories couldsupport 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 andinformation provision to patients and their families, thus increasing quality even more. Hospitalsseem to be becoming aware of the benefits social media could offer. Data from the United Statesshow that hospitals increasingly use social media, but it is unknown whether and how WesternEuropean 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 12Western European countries through an Internet search. We collected data for each country duringthe following three time periods: April to August 2009, August to December 2010, and April toJuly 2011.RESULTS: We included 873 hospitals from 12 Western European countries, of which 732 weregeneral hospitals and 141 were university hospitals. The number of included hospitals per countryranged from 6 in Luxembourg to 347 in Germany. We found hospitals using social media in allcountries. 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 countrieswere significant.CONCLUSIONS: Social media awareness in Western European hospitals is growing, aswell as its use. Social media usage differs significantly between countries. Except for theNetherlands and the United Kingdom, the group of hospitals that is using social media remainssmall. Usage of LinkedIn for recruitment shows theawareness of the potential of social media. Future research is needed to investigate how socialmedia 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
  11. 11. According to the National Research Corporation, 1 in 5 Americans use social media sites to obtainhealthcare information. Patients can easily access information on medical conditions and medicalprofessionals; however physicians may not be aware of the nature and impact of this information.All physicians must learn to usethe Internet to their advantage and be acutely aware of the disadvantages. Surgeons are in a uniqueposition because, unlike in the primary care setting, less time is spent developing a long-termrelationship with the patient. In this literature review, we discuss the impact of the Internet, socialnetworking websites, and physician rating websites and make recommendations for surgeons aboutmanaging 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.auAhealth social network is an online information service which facilitates information sharing betweenclosely related members of a community with the same or a similar health condition. Over theyears, many automated recommender systems have been developed for social networking in orderto help users find their communities of interest. For health social networking, the ideal source ofinformation 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 isdeveloped 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 withoutrevealing sensitive personal information. The d-words are simple words like "food, and thus do notcontain identifiable personal information. This makes our method an effective one-way hashing ofpatient assessments for a similarity measure. The d-words can be easily shared on the Internet tofind 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 womens 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.eduBACKGROUND: Many young women have turned to illness blogs to describe their livedexperience with cancer. Blogs represent an untapped source of knowledge for researchers andclinicians.OBJECTIVE: The purpose of this qualitative, exploratory study was to describe the life disruptionscaused by cancer among young women, as well as to understand the facilitators and barriers inaccessing healthcare services during and after active treatment.METHODS: Sixteen Internet illness blogs were analyzed among women, aged between 20 and 39years, diagnosed with cancer. These blogs were analyzed based on phenomenological qualitativemethods and thematic analysis.RESULTS: There were 4 dimensions of persistent problems that were articulated in the narrativesof the young women without any relief. They included pain and fatigue, insurance and financialbarriers, concerns related to fertility, andsymptoms of posttraumatic stress and anxiety.CONCLUSION: The young womens narratives capture fear, uncertainty, anger, and thedebilitating 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
  12. 12. 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 clinicexperiences. PMID: 22495504 [PubMed - in process]23. Support Care Cancer. 2012 Nov;20(11):2737-46. doi: 10.1007/s00520-012-1395-x. Epub 2012Mar 3.Testicular cancer survivors supportive care needs and use of online support: a cross-sectionalsurvey.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, 200Elizabeth Street, Toronto, M5G 2C4, ON, Canada.INTRODUCTION: The supportive care needs of testicular cancer survivors have not beencomprehensively studied. Likewise, there is limited research on their use of the Internet or socialmedia applications--tools that are popular among young adults and which could be used to addresstheir needs.METHODS: Two hundred and four testicular cancer patients receiving care at an urban cancercenter completed a questionnaire assessing supportive care needs and the use and preferences foronline support. We examined the associations between patient characteristics and met or unmetsupportive 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, mostcommonly (25%) concerning financial support, body image,stress, being a cancer survivor, and fear of recurrence. Patients who were younger, hadnonseminoma testicular cancer, or received treatment beyond surgery had more needs, and thosewho were unemployed had more unmet needs. The majority of respondents (71.5%) were socialmedia 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 comfortusing computers (2.5%). Users were more likely to speak English as a first language and have moreneeds.CONCLUSIONS: At least one in four testicular cancer survivors has unmet needs related tofinancial support, body image, stress, being a cancer survivor, and fear of recurrence. A web-basedresource may be a useful strategy to consider given the high prevalence of social media use in thissample and their desire for online support. Efforts are needed to raise awareness about online peersupport 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 SaudiArabia.Alsanea N.Colon & Rectal Section, Department of Surgery, King Faisal Specialist Hospital and ResearchCentre, Riyadh, Saudi Arabia. nsanea@kfshrc.edu.saFive 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 differentplatforms, applications and institutions,delivery of patient services via the internet, use of the digital media and social networking as amedium for education and preventive medicine and introduction of smart applications as counselorsto prevent medical errors. The implications of such changes are huge. Saudi Arabia is not isolatedfrom such important developments. This article explores the future of health care delivery with aspecial focus on the experience of a tertiary care center in Saudi Arabia that has led the wave insuch changes regionally.PMID: 22366822 [PubMed - in process]
  13. 13. 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 vendorcharacteristics.Liang BA, Mackey TK. Institute of Health Law Studies, California Western School of Law, SanDiego, CA92101, United States. baliang@alum.mit.eduBACKGROUND: Unprecedented drug shortages announced by the US Food and DrugAdministration (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 andpotential patient safety risks.METHODS: We performed a descriptive study of the prevalence of online marketing for shortagedrugs-that is, offers for sale of each drug, includingcharacteristics of online drug sellers andintermediary sites marketing thesev drugs.RESULTS: Of the 72 FDA shortage-listed drugs, 68 (94%) were offered for sale online. We found291 offers for these drugs, the vast majority (n = 207, 71.1%) by online drug sellers selling direct toconsumers. Intermediary sites includeddata 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 onlinedrug sellers (n = 21, 68%) were on the National Association of Boards ofPharmacy (NABP) Not Recommended Sites list. Finally, for shortage drugs with an online drugseller (n = 58, 85%), 53 (91%) had at least one site on the Not Recommended list and 21 (36%) hadonly sites on the Not Recommended list.CONCLUSIONS: FDA shortage drugs are widely marketed over the Internet. Suspect online drugsellers and intermediaries dominate these sales offers. As a critical risk management issue, patients,providers, and policymakers should be extremely cautious in procuring shortage drugs throughInternet sourcing.PMCID: PMC3374535PMID: 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 andHepatology, Chapel Hill, North Carolina 27599, USA. millie_long@med.unc.eduBACKGROUND: The widespread use of the Internet allows for unique research opportunities. Weaimed to develop and follow an Internet-based cohort (e-cohort) vof patients with self-reportedinflammatory bowel diseases (IBD) over time.METHODS: We established an e-cohort of adults with IBD (CCFA Partners) byvrecruiting throughCrohns and Colitis Foundation of America (CCFA) email rosters, CCFA Website promotion, socialmedia, and other publicity mechanisms. The baseline survey included modules on disease courseand activity, diet and exercise, and patient-reported outcomes (PROs). Baseline characteristics ofthevcohort are summarized using descriptive statistics.RESULTS: A total of 7819 adults with IBD joined CCFA Partners through August, 2011. Themedian age was 42 years (interquartile range [IQR] 30-54), 5074 (72.3%) were female. A total of4933 (63.1%) had Crohns disease (CD), 2675 (34.2%) had ulcerative colitis (UC), and 211 (2.7%)had IBD unspecified. For CD, the meanshort CD Activity Index (CDAI) was 151.9 (standard deviation [SD] 106.4), with 2274 (59.4%) in
  14. 14. remission. For UC, the mean simple clinical colitis activity index (SCCAI) was 3.6 (SD 2.8), with937 (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 medicationadherence score (MMAS) was 5.7 (SD 2.0). MMAS scores were inversely correlated with diseaseactivity (P < 0.01).CONCLUSIONS: CCFA Partners is a novel e-cohort. Enrollment is ongoing, with surveys twiceyearly. CCFA Partners represents a unique resource to study PROs and changes in diseasemanagement over time.Copyright © 2012 Crohns & 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 thequality of that information. A European survey was conducted under the auspices of the FP7European Commission funded Eurocancercoms project during the period September 2010-March2011. Its aim was to assess current online information needs of people with cancer particularlythose who seek information using online social media technologies and the internet more broadly. Aliterature review was undertaken to gain a greater understanding of health seeking behaviourregarding cancer patients information needs and patient preferences for accessing different formatsand media. This was used to inform the design and validation of online pan-European, multi-lingualquestionnaires distributed via patient organizations and via specific Eurocancercoms partnerorganizations. This paper presents the results of this survey and suggests recommendations to beincorporated into the design of the online platform, ecancerHub, one of the intended outcomes ofthe Eurocancercoms project following this research. People want a wide variety of easy to find,easy to understandaccurate information about cancer and how it is likely to impact on their everyday lives and onthose close to them. They differ in the amount and detail of the information they would like and ontheir ability to identify quality information and understand it sufficiently to base their health-caredecisions on. The majority of respondents raised the issue of quality of information and manyrequested recommendations of websites by the people who usually influencethem most, the health professionals involved in their care.PMCID: PMC3239170PMID: 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 andpatients.Fortinsky KJ, Fournier MR, Benchimol EI.Division of Gastroenterology, Hepatology & Nutrition, Childrens Hospital of Eastern Ontario,Ottawa, Canada.Patients with inflammatory bowel disease (IBD) are increasingly turning to the Internet to researchtheir condition and engage in discourse on their experiences. This has resulted in new dynamics inthe relationship between providers and their patients, with misinformation and advertisingpotentially presenting barriers to the cooperative patient-provider partnership. This article addressesimportant 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 onlineinformation provided to IBD patients, and summarized the most commonly accessed Websitesrelated to IBD. We also assessed the activity on popular social media sites (such as Facebook,
  15. 15. Twitter, and YouTube), and evaluated currently available applications for use by IBD patients andproviders on mobile phones and tablets. Through our review of the literature and currently availableresources, we developed a list of recommended online resources to strengthen patient participationin their care by providing reliable, comprehensive educational material.Copyright © 2011 Crohns & 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-managementskills.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.eduDiabetes self-management (DSM) training helps prevent diabetic complications. eHealthapproaches may improve its optimal use. The aims were to determine a) acceptability of e-HealthyStrides© (an interactive, Internet-based, patient-driven, diabetes self-management supportand social networking program) among Morehouse Community Physicians Network diabetics; b)efficacy for DSM behavior change c) success factors for use of e-HealthyStrides©. Baselinecharacteristics of pilot study participants are reported. Of those approached, 13.8% agreed toparticipate. 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%) failedthe 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) butmanaging psychosocial aspects = 3.89 (0.89) scored lower than other domains. There was lowoverall confidence for DSM behaviors. Assistance with healthy eating was the most frequentlyrequested service. Requestors were more obese with worse A1C than others. Chronic care deliveryscored average with high scores for counseling and problem solving but low scores for carecoordination and follow up.PMCID: PMC3571092PMID: 22102311 [PubMed - indexed for MEDLINE]30. Acad Emerg Med. 2011 Nov;18(11):1217-9. doi: 10.1111/j.1553-2712.2011.01199.x. Epub2011 Nov 1.How Facebook saved our day!Ben-Yakov M, Snider C. maxim.benyakov@utoronto.caComment 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. Todays medical literature isfocused on concerns of professionalism inyoung health care practitioners vis-à -vis the lay public as they continuously expose themselvesthrough this online social medium. With over 500 million users, Facebook hosts many of ourpatients, who are also exposed to the Internet and social media. Nobody so far has considered theopposite issue: that of physician invasion of privacy by "looking-up" a patient on Facebook duringclinical practice for purposes of history-taking or diagnostic clues in situations wherepatients are too ill to provide needed information. We need to consider the ethical implications ofprivacy invasion in the current era of information technology. We need to acquire and maintain acertain level of "social media competency" to better debate the issues around Facebook and how weintegrate 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]
  16. 16. 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 modelfor 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 fundamentalcomponents of a therapeutic process. They contribute to improve the patient-health careprofessional relationship, to facilitate doctor-patientrelationships, therapeutic compliance and adherence, and to the informed consent in innovativeclinical trials. We report the results of a multicentric national initiative that developed a 17-information-structure network: 16 InformationPoints located in the major state-funded certified cancer centers and general hospitals across Italyand 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 createthe National Cancer Information Service (SION). The project is the result of a series of pilot andresearch projects funded by the Italian Ministry of Health. The Information Service model proposedis 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 bothscientific accuracy and communicative style; 4) adequate locations for appropriate positioning andprivacy (adequate visibility); 5) appropriate advertising. First results coming from these initiativescontributed to introduce issues related to "Communication and Information to patients" as a "PublicHealth Instrument" to the National Cancer Plan approved by the Ministry of Health for the years2010-2012.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 2011Jul 18.Brokers, consumers and the internet: how North American consumers navigate theirinfertility journeys.Speier AR.Anthropology, Eckerd College, St. Petersburg, FL 33711, USA. speiera@eckerd.eduComment in Reprod Biomed Online. 2011 Dec;23(7):817-9. North Americans who sufferinfertility often reach an end to treatment options at home, whether it is due to a lack of egg donorsin 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 conductendless Google searches, come across IVF brokers, join support groups, read blogs and meet otherson the road of infertility. This paper considers the journeys that North American patients make toclinics in Moravia, Czech Republic. Along these travels, patients engage with support groups, otherpatients, IVFbrokers and clinic co-ordinators. Since the distance travelled between North America and Europe isextensive, reproductive travels may be arranged by clinical staff, travel brokers and patients. Actingas consumers, North Americans make different choices along their journeys – the use of abroker, 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 brokersand 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
  17. 17. 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.eduPURPOSE: The current study examined the prevalence with which healthcare providers use a socialmedia site (SMS) account (e.g., Facebook), the extent to which they use SMSs in clinical practice,and their decision-making process afteraccessing patient information from an SMS.METHODS: Pediatric faculty and trainees from a medical school campus were provided a SMShistory form and seven fictional SMS adolescent profile vignettes that depicted concerninginformation. Participants were instructed to rate their personal use and beliefs about SMSs and toreport how they would respond if they obtained concerning information about an adolescent patientfrom their public SMS profile.RESULTS: Healthcare providers generally believed it not to be an invasion of privacy to conductan Internet/SMS search of someone they know. A small percentage of trainees reported a personalhistory of conducting an Internetsearch (18%) or an SMS search (14%) for a patient. However, no faculty endorsed a history ofconducting searches for patients. Faculty and trainees also differed in how they would respond toconcerning SMS adolescent profile information.CONCLUSIONS: The findings that trainees are conducting Internet/SMS searches of patients andthat faculty and trainees differ in how they would respond to concerning profile information suggestthe need for specific guidelines regarding the role of SMSs in clinical practice. Practice, policy, andtraining implications are discussed.Copyright © 2011 Society for Adolescent Health and Medicine. Published by Elsevier Inc. Allrights reserved.PMCID: PMC3179605PMID: 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.ukBACKGROUND: There is little information on factors influencing patient choice of renalreplacement modality (RRM) in the UK. Pre-dialysis education programmes have been associatedwith increased uptake of peritoneal dialysis (PD) in other countries but their relevance in informingpatient choice within UK centres has not been extensively studied. In this study, we examined howpatient choice of different treatment modalities [haemodialysis (HD), PD and conservativemanagement (CM)] is influenced by personal and demographic parameters.METHODS: Questionnaires were sent to 242 pre-dialysis patients from a single centre. Patientswere 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 hadchosen HD, 20% PD and 10% had opted for CM. There was a clear association between age andmodality choice. Mean age of patients choosing PD was 55 years compared to 68 years for HD and84 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 and7.7 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 andfriends views. Using analysis of variance, there was a statistically significant variance between the
  18. 18. 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 formaleducation day compared to 32.9% that chose HD and 0% that chose CM (P=0.011). The followingdemographic 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 havinganother person living at home (PD 100%, HD 69.5%, CM 50%; P=0.003). Patients who have had asocial services assessment in the last 12 months or received private care services or disabilityallowance were more likely to choose CM.CONCLUSIONS: This study highlights important factors influencing patient choice of end-stagerenal disease treatment modality including CM. While some of these are non-modifiable, such asage and degree of co-morbidity, others draw attention to the importance of good informationprovision and pre-dialysis education in empowering socially able patients to choose self-caretherapies. Furthermore, the overwhelming association of having a strong social support network andbeing 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.eduOBJECTIVES: Consumer empowerment in health and rapid change in health information andcommunication technologies have their roots in broader social trends. This article reviews theactivities 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 communicationtechnologies into health care, in both searching for and sharing information on the Internet, in theuse of social media to create new types ofinteractions with family, providers, and peers, and in the e-patient, who integrates these new rolesand new technologies.IMPLICATIONS FOR NURSING PRACTICE: Changes in both patients and technology willimpact 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 trialsto the social web and beyond.Baldwin M, Spong A, Doward L, Gnanasakthy A. Novartis Horsham Research Centre, Horsham,West Sussex, UK. mike.baldwin@novartis.comInternet communication is developing. Social networking sites enable patients to publish andreceive communications very easily. Many stakeholders, including patients, are using these mediato find new ways to make sense of diseases, to find and discuss treatments, and to give support topatients 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 thesocial web have important implications for decision making, at both an individual and a populationlevel. We discuss new emergent technologies that will help aggregate this information and discusshow this will be assessed alongside the use of PROs in randomized controlled trials and how thesenew emergent data will be one facet of changing the relationship between the various stakeholdersin achieving better co-created health.PMCID: PMC3580131 PMID: 21766890 [PubMed - indexed for MEDLINE]
  19. 19. 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 ofAntwerp, Antwerp, Belgium. joris.michielsen@ua.ac.bePURPOSE: Recently, the Indian government launched health insurance schemes for the poor bothto protect them from high health spending and to improve access to high-quality health services.This article aims to review the potentials ofhealth insurance interventions in order to improve access to quality care in India based onexperiences 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 ScienceResearch Network and databases of research centers were searched up to September 2010. AnInternet search was executed.STUDY SELECTION: One thousand hundred and thirty-three papers were assessed for inclusionand exclusion criteria. Twenty-five papers were selected providing information on eight schemes.DATA EXTRACTION: A realist review was performed using Hirschmans exit-voice theory:mechanisms to improve exit strategies (financial assets and infrastructure) and strengthen patientslong voice route (quality management) and short voice route (patient pressure).RESULTS OF DATA SYNTHESIS: All schemes use a mix of measures to improve exit strategiesand the long voice route. Most mechanisms are not effective in reality. Schemes that focus on thepatients bargaining position at the patient-provider interface seem to improve access to quality care.CONCLUSION: Top-down health insurance interventions with focus on exit strategieswill not work out fully in the Indian context. Government must actively facilitate the potential ofCHI schemes to emancipate the target group so that they may transform from mere passivebeneficiaries into active participants intheir 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.ukBACKGROUND: Patients are no longer passive recipients of health care, and increasingly engagein 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 rangeof social, media, and online information sources. Government initiatives recognise self-delivery ofhealth care as a valuable means of responding to the anticipated increased global demand for healthresources. Automated External Defibrillators (AEDs), designed for the treatment of Sudden CardiacArrest (SCA), have recently become available for over the counter purchase with no need for aprescription. This paper explores the claims and argumentation of lay persons and health carepractitioners 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: onlineconsumer opinions of AED devices posted on Amazon.com, the worlds largest online retailer. Atotal 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 tothese devices, and also driven by theory, centring around the parameters that may impact upon theacceptance, adoption and use of these devices within the home as indicated by the TechnologyAcceptance Model (TAM).
  20. 20. RESULTS: Five high-level themes around which arguments for and against the adoption of homeAEDs are identified and considered in the context of TAM. These include opinions relating todevice usability, usefulness, cost, emotional implications of device ownership, and individualpatient risk status. Emotional implications associated with AED acceptance, adoption and useemerged 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 areconsidered within the context of existing AED research, and related to technology acceptancetheory. From a methodological perspective, this study demonstrates the potential value of onlineconsumer reviews as a novel data source for exploring the parameters of public debate relating toemerging health care technologies.PMCID: PMC3111383PMID: 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 guidelinesconcerning social networking on the Internet is necessary]. [Article in Swedish]Chenik M, Bolinder G, Juth N. Karolinska universitetssjukhuset, Stockholm.marie.chenik@karolinska.sePMID: 21574413 [PubMed - indexed for MEDLINE]40. Duodecim. 2011;127(7):692-8.[Internet-based cognitive-behavioral therapy in the treatment of psychiatricdisorders].[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-mailwith the support person directing the therapy. Internet-based cognitive-behavioral therapy usuallyconsists of psychoeducation, exercises and prevention of the recurrence of symptoms. Modules ofthe network program are thus the cornerstones of "live" cognitive-behavioral therapy. Self-helpprovided by Internet-based cognitive-behavioral therapy therapy has been found to be effectiveespecially in the treatment of panic disorder, social phobia and depression, providing an opportunityto 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 2011May 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, Universityof Massachusetts Boston, Boston, MA 02125, USA. edward.miller@umb.eduThis study explores whether there are gender and occupational differences in the healthblogosphere and whether there are differences by blogger perspective. Data were derived fromcontent analysis of 951 health blogs identified between June 2007 and May 2008. Results indicatethat 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 professionalperspective. Women, bloggers in non-health-related employment, and patient/consumer andcaregiver 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 isbecoming a primary source of health information, establishing normative guidelines regardinginformation quality, patient privacy, and conflicts of interest is essential. Future research shouldbuild on these findings using national surveys of health bloggers and textual analysis of blog
  21. 21. 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.orgBACKGROUND: Social network sites have been growing in popularity across broad segments ofInternet users, and are a convenient means to exchange information and support. Research on theiruse for health-related purposes is limited.OBJECTIVE: This study aimed to characterize the purpose, use, and creators of Facebook groupsrelated to breast cancer.METHODS: We searched Facebook (www.Facebook.com) using the term breast cancer. Werestricted our analysis to groups that were related to breast cancer, operated in English, and werepublicly available. Two of us independently extracted information on the administrator and purposeof the group, as well as the number of user-generated contributions. We developed a codingscheme to guide content analysis.RESULTS: We found 620 breast cancer groups on Facebook containing a total of 1,090,397members. 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/caregiversupport (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 orientedgroups, 47% (27/57) of which were established by high school or college students, were associatedwith 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 popularityand reach, further research is warranted to explore the implications of social network sites as ahealth resource across various health conditions, cultures, ages, and socioeconomic groups.PMCID: PMC3221337PMID: 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 Americansociety for pain management nursing survey.Ware LJ, Bruckenthal P, Davis GC, OConner-Von SK.University of West Georgia, Carrollton, GA, USA. lware@westga.eduWhat is the meaning of advocacy, and how does it relate to the nurse who wants patients toexperience optimum pain management? This question and the lack of empirical data provided thestimulus for the American Society for Pain Management Nursing (ASPMN) Research Committee toexplore ASPMN members beliefs, knowledge, and skills regarding pain management advocacyactivities. The specific aim of the study was to determine the educational needs for and barriers ofadvocacy for nurses working with patients experiencing pain. An ASPMN Advocacy SurveyInstrument was developed to gather data about advocacy activities and interventions. The sampleconsisted of 188 ASPMN nurses (20% of the membership) who responded via the internet. Studyfindings revealed that the majority of nurse respondents were active in personal advocacy, servingas guardians of the patient. They confronted physicians as necessary and assisted patients toevaluate their pain management. Regarding making the public aware of pain management-relatedissues (i.e., public awareness advocacy), the respondents were not as active. Respondents wereknowledgeable about pain management and best practices/best evidence, with the exceptions oflegislative 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
  22. 22. political advocacy interventions. "Lack of time" was identified as the barrier to advocacyexperienced by the greatest number of nurses.Copyright © 2011 American Society for Pain Management Nursing. Published byElsevier 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 ofpatients internet blogs.Shah SG, Robinson I.Multidisciplinary Assessment of Technology Centre for Healthcare, Department of InformationSystems and Computing, Brunel University, Uxbridge, Middlesex UB8 3PH, UK.Sarwar.Shah@brunel.ac.ukBACKGROUND: Patients on oral anticoagulant therapy (OAT) require regular testing of theprothrombin time (PT) and the international normalised ratio (INR) to monitor their bloodcoagulation level to avoid complications of either over or under coagulation. PT/INR can be testedby a healthcare professional or by the patient. The latter mode of the testing is known as patientself-testing or home testing. The objective of this study was to elicit patients perspectives andexperiences 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 XSightand NVivo software packages.RESULTS: The key themes in relation to self-testing of OAT identified were as follows: Patientbenefits reported were time saved, personal control, choice, travel reduction, cheaper testing, andpeace of mind. Equipment issues includedhigh costs, reliability, quality, and learning how to use the device. PT/INR issues focused on thefrequency of testing, INR fluctuations and individual target (therapeutic) INR level. Other themesnoted were INR testing at laboratories, the interactions with healthcare professionals in managingand 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 inunderstanding 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-testingprogrammes in the healthcare system. Thus, the issues elicited in this study are very valuable for allstakeholders involved in developing effective self-testing strategies in healthcare that are gainingconsiderable current momentum particularly for patients with chronic illness.PMCID: PMC3045880PMID: 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 Jan13.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.eduAIM: This aim of the review was to describe differences in ethical approaches to research onInternet communication during illness and to report conclusions drawn relevant to a proposednarrative analysis of parent blogs of childhood illness.BACKGROUND: As the study of the online expression of illness experiences becomes moreexpansive, discussion of related ethical issues is central to promoting research trustworthiness andrigour. Ethical considerations are central to the patient-provider relationship.DATA SOURCES: The EBSCO Host, CINAHL, Medline, Communication & Mass Media
  23. 23. Complete, and Google Scholar databases were searched from January 1990 toSeptember 2009 usingthe terms Internet research and ethics, Internet research, illness and ethics and blog, Internetresearch 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 conceptsanalysed and the qualitative research measures taken concerning ethics in Internet research acrossformats.RESULTS: Three main approaches to ethical conduct in Internet research on illness experienceswere found: human subjects, representation and open source approaches.CONCLUSION: The personal and sensitive nature of online illness narratives demand theirconsideration in health care as human subjects research. The best hope for ethical treatment ofauthor-participants is the creation of a comprehensive plan for addressing any and all potentialethical conflicts that may arise in the collection, analysis and reporting of data, taking intoconsideration 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.eduPURPOSE: The characteristics of pharmacist blogs were examined.METHODS: Internet search engines, blog aggregators, and blog rolls were used to identifypharmacist 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 usedto 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% ofbloggers. Bloggers practiced in community (43.1%) and noncommunity (43.1%) settings.Pharmacists most commonly used positive language to describe the profession (32%), other healthcare professionals (25%), and patients (25%). The highest rates of critical language were found indescriptions of patients (57%) and other health care professionals (44%). Almost half of pharmacistblogs contained explicit or unprofessional language. Overall, community practitioner blogs weresubstantially more likely than noncommunity practitioner blogs to use unprofessional and criticallanguage. 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 identified117 blogs, 44 of which met the study criteria for designation as pharmacist blogs. The majority ofpharmacist blogs included some type of discussion of pharmacologic therapies. Pharmacists mostcommonly used positive language to describe the profession, other health care professionals, andpatients. The highest rates of critical language were found in descriptions of patients and otherhealth 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, andPublic Health, Department of Experimental and Applied Medicine, University of Brescia, Brescia,Italy. gorizio@med.unibs.itOBJECTIVE: as the participatory Web developed to create virtual worlds and communities, healthinstitutions and activists discovered Web 2.0 tools, in particular the creation of health-related online
  24. 24. social networks. To analyze the existing online social networks dedicated to health issues, weperformed an active search on the Internet for such Web sites and analyzed their features accordingto the content analysis method.METHODS: the study was performed in September and October 2009. We analyzed a sample ofhealth social networks for patients, selected using four common search engines. A codebook waselaborated to investigate four areas: generalinformation; technical characteristics and utilities; characteristics of the Web site and contents, bothgeneral and related to the online community.RESULTS: the search led to a sample of 41 social networks. Twenty-three Web sites (56.1%) werededicated 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 oroperating 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 asponsor 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%) gavetherapeutic information. Two Web sites (4.9%) published aggregate statistical data about thepatients registered with thesocial network.CONCLUSIONS: the data reveal the high heterogeneity of health-related social networks and raiseinteresting considerations on such controversial topics as the quality of online health information,research perspectives, interactivity, and empowerment. In particular, our findings are relevant tocriticism regarding the openness and transparency of these Web sites, the use of personal data, andprivacy issues.PMID: 21070131 [PubMed - indexed for MEDLINE]48. Cyberpsychol Behav Soc Netw. 2010 Oct;13(5):483-94. doi: 10.1089/cyber.2009.0351. Epub2010 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 PsychiatricInstitute, 1051 Riverside Drive, New York, NY 10032, USA. kalapat@pi.cpmc.columbia.eduOBJECTIVES: This study was an anonymous Internet survey of individuals currently diagnosedwith borderline personality disorder (BPD), where participants gave opinions about BPD criteria inthe 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, and646 responses were analyzable. Results indicated that the majority of the DSM-IV-TR criteriaappeared to capture what participants were experiencing, even though a significant percentage ofparticipants felt that something was missing from the current criteria. A significant percentage ofparticipants 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 withBPD to share their opinions on the DSM criteria with mental-health professionals. A significantpercentage of participants in this study felt that BPD should be renamed in the DSM-V. Patientinvolvement 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.
  25. 25. Integrating the hospital library with patient care, teaching and research: model and Web 2.0tools 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.orgBACKGROUND: Research in hospital settings faces several difficulties. Information technologiesand certain Web 2.0 tools may provide new models to tackle these problems, allowing for acollaborative 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 anetwork of learning and investigation resources in a hospital setting.METHODS: A multi-disciplinary work group analysed the needs of the research community. Westudied the opportunities provided by Web 2.0 tools and finally we defined the spaces that wouldbe developed, describing their elements, members and different access levels. MODELDESCRIPTION: WIKINVESTIGACION is a collaborative web space with the aim of integratingthe management of all the hospitals teaching and research resources. It is composed of five spaces,with different access privileges. The spaces are: Research Group Space wiki for eachindividual research group, Learning Resources Centre devoted to the Library, News Space, Forumand Repositories.CONCLUSIONS: The Internet, and most notably the Web 2.0 movement, is introducing someoverwhelming changes in our society. Research and teaching in the hospitalsetting will join thiscurrent 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.comThis chapter contains clinical studies and reviews of the state-of-the-art regarding how informationtechnology can help improve outcomes for patients with diabetes through enhanced education andsupport. With the increasing sophistication of diabetes treatment protocols and diabetes-relateddevices this new modality offers a remarkable opportunity for clinicians and patients. For the firsttime, with online tools clinicians are in a position to have a major impact on diabetes outcomes byproviding robust and affordable just-in-time support to large numbers of patients who want toimprove their diabetes outcomes through enhanced self-management of the complex behaviours soessential for good outcomes. Patients with diabetes often need a complex set of services and supportranging from glucose monitoring, insulin and other medication management, psychotherapy andsocial support, to physical activity promotion, nutrition counselling and more. Integrating thesesupports into a patients therapeutic regimen presents challenges that need to be addressed through avariety of strategies. Patient self-management of diabetes enabled by information technology isbecoming an important factor in the way providers deliver healthcare. Approaches usinginformation technology to support clinical services are being dramatically altered by the confluenceof several trends. * Patients want an active role in managing their own health and a collaborativerelationship with their healthcare providers. * Widespread, low-cost internet access is erasingexisting geographic, economic and demographic barriers to obtaining health information online, andwith advanced Web 2.0 technologies high levels of interactivity can engage the patient. * Cliniciansand researchers now have a deeper understanding of how people learn and respond online, and thatknowledge 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 ofservice provision in which technology enabled self-management support (SMS) provides patientswith * just-in-time delivery of tailored messages and experience that speak to each person based ontheir unique characteristics, their performance on key behaviours and their needs at that moment intime; * ways to easily and accurately keep track of their performance and use that knowledge toplan and implement new approaches to reaching their goals; * ways to link directly to family and