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. firstname.lastname@example.orgNew 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]
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.email@example.comRecent 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. firstname.lastname@example.org.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
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
Birmingham, Childrens of Alabama, Birmingham, AL, USA. email@example.comOBJECT: 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. firstname.lastname@example.orgIt 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.
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 1.5â€‰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 2.9â€‰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.email@example.comBACKGROUND: 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
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. firstname.lastname@example.orgBACKGROUND: 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. email@example.com
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. firstname.lastname@example.orgAhealth 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. email@example.comBACKGROUND: 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
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. firstname.lastname@example.orgFive 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]
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. email@example.comBACKGROUND: 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. firstname.lastname@example.orgBACKGROUND: 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
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. email@example.comPURPOSE: 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. firstname.lastname@example.orgBACKGROUND: 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).
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.email@example.comPMID: 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, KÃ¤hkÃ¶nen S. JÃ¤rvenpÃ¤Ã¤n 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. firstname.lastname@example.orgThis 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
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.email@example.comBACKGROUND: 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. firstname.lastname@example.orgWhat 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
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. email@example.comOBJECTIVES: 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.
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 MÃ³stoles, Madrid, Spain.firstname.lastname@example.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. email@example.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