Fattori - 50 abstracts of e patient. In collaborazione con Monica Daghio

#web2salute
50 Abstracts of E-patient
1. Rev Med Liege. 2013 Feb;68(2):74-8.
[Reticence to vaccination: an approach to the phenomenon through a literature review].
[Article in French]
Ketterer F, Trefois P, Miermans MC, Vanmeerbeek M, Giet D.
DÃ©partement de MÃ©decine gÃ©nÃ©rale, UniversitÃ© de LiÃ¨ge, Belgique.
Although it exists since vaccination appeared, reticence towards vaccination seems to be increasing.
Through a literature review, this article first analyses the reasons for this reticence. The decline of
infectious diseases leads to greater attention to side effects of vaccines; on the other hand, the social
evolution leads patients to search for zero risk in different aspects of life. Suspiciousness towards
the State and the influence of media emphasizing potential deleterious effects of each vaccine are
additional phenomena explaining people's hesitations. Anti-vaccination movements using Internet
to disseminate their ideas are also responsible. Secondly, the article aims at assessing the public
opinion about vaccination. It is still predominantly positive, even if questions remain. A typology
of four patients' profiles based on statistical results is proposed. Finally, after having examined the
medical doctors' opinion concerning vaccination, this article ends with some pieces of advice on
how to deal with vaccination in the patient-doctor relationship.
PMID: 23469487 [PubMed - indexed for MEDLINE]
2. J Cardiovasc Electrophysiol. 2013 Apr;24(4):480-3. doi: 10.1111/jce.12097. Epub 2013 Feb 19.
Ubiquitous Wireless ECG Recording: A Powerful Tool Physicians Should Embrace.
Saxon LA.
Division of Cardiovascular Medicine, Keck School of Medicine, University of Southern California,
Los Angeles, California, USA.
Ubiquitous Wireless ECG Recording. The use of smart phones has increased dramatically and there
are nearly a billion users on 3G and 4G networks worldwide. Nearly 60% of the U.S. population
uses smart phones to access the internet, and smart phone sales now surpass those of desktop and
laptop computers. The speed of wireless communication technology on 3G and 4G networks and
the widespread adoption and use of iOS equipped smart phones (Apple Inc., Cupertino, CA, USA)
provide infrastructure for the transmission of wireless biomedical data, including ECG data. These
technologies provide an unprecedented opportunity for physicians to continually access data that
can be used to detect issues before symptoms occur or to have definitive data when symptoms are
present. The technology also greatly empowers and enables the possibility for unprecedented
patient participation in their own medical education and health status as well as that of their social
network. As patient advocates, physicians and particularly cardiac electrophysiologists should
embrace the future and promise of wireless ECG recording, a technology solution that can truly
scale across the global population. (J Cardiovasc Electrophysiol, Vol. 24, pp. 480-483, April 2013).
Â© 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.
Childrenâ€™sHospital Informatics Program, One Autumn Street, Boston, MA 02215, USA.
elissa.weitzman@childrens.harvard.edu
Comment in JAMA Intern Med. 2013 Mar 11;173(5):352-3. JAMA Intern Med. 2013 Mar
11;173(5):352-3.
IMPORTANCE: Surveillance systems for elucidating the burden of hypoglycemia are limited.
OBJECTIVE: To quantify experiences of hypoglycemia and related harms, members of an

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Integrating the hospital library with patient care, teaching and research: model and Web 2.0
tools to create a social and collaborative community of clinical research in a hospital setting.
Montano BS, Garcia Carretero R, Varela Entrecanales M, Pozuelo PM.
Health Science Library, Hospital Universitario de MÃ³stoles, Madrid, Spain.
bsanjose.hmtl@salud.madrid.org
BACKGROUND: Research in hospital settings faces several difficulties. Information technologies
and certain Web 2.0 tools may provide new models to tackle these problems, allowing for a
collaborative approach and bridging the gap between clinical practice, teaching and research.
OBJECTIVES: We aim to gather a community of researchers involved in the development of a
network of learning and investigation resources in a hospital setting.
METHODS: A multi-disciplinary work group analysed the needs of the research community. We
studied the opportunities provided by Web 2.0 tools and finally we defined the spaces that would
be developed, describing their elements, members and different access levels. MODEL
DESCRIPTION: WIKINVESTIGACION is a collaborative web space with the aim of integrating
the management of all the hospital's teaching and research resources. It is composed of five spaces,
with different access privileges. The spaces are: Research Group Space 'wiki for each
individual research group', Learning Resources Centre devoted to the Library, News Space, Forum
and Repositories.
CONCLUSIONS: The Internet, and most notably the Web 2.0 movement, is introducing some
overwhelming changes in our society. Research and teaching in the hospitalsetting will join this
current and take advantage of these tools to socialise and improve knowledge management.
50. Int J Clin Pract Suppl. 2010 Feb;(166):41-6. Doi: 10.1111/j.1742-1241.2009.02277.x.
Internet and information technology use in treatment of diabetes.
Kaufman N. UCLA School of Medicine, Los Angeles, CA 90025, USA. nkaufman@dpshealth.com
This chapter contains clinical studies and reviews of the state-of-the-art regarding how information
technology can help improve outcomes for patients with diabetes through enhanced education and
support. With the increasing sophistication of diabetes treatment protocols and diabetes-related
devices this new modality offers a remarkable opportunity for clinicians and patients. For the first
time, with online tools clinicians are in a position to have a major impact on diabetes outcomes by
providing robust and affordable just-in-time support to large numbers of patients who want to
improve their diabetes outcomes through enhanced self-management of the complex behaviours so
essential for good outcomes. Patients with diabetes often need a complex set of services and support
ranging from glucose monitoring, insulin and other medication management, psychotherapy and
social support, to physical activity promotion, nutrition counselling and more. Integrating these
supports into a patient's therapeutic regimen presents challenges that need to be addressed through a
variety of strategies. Patient self-management of diabetes enabled by information technology is
becoming an important factor in the way providers deliver healthcare. Approaches using
information technology to support clinical services are being dramatically altered by the confluence
of several trends. * Patients want an active role in managing their own health and a collaborative
relationship with their healthcare providers. * Widespread, low-cost internet access is erasing
existing geographic, economic and demographic barriers to obtaining health information online, and
with advanced Web 2.0 technologies high levels of interactivity can engage the patient. * Clinicians
and researchers now have a deeper understanding of how people learn and respond online, and that
knowledge can be crafted into solutions that produce effective, long-term behaviour change.
Technology enabled approaches that show great promise to improve outcomes use new models of
service provision in which technology enabled self-management support (SMS) provides patients
with * just-in-time delivery of tailored messages and experience that speak to each person based on
their unique characteristics, their performance on key behaviours and their needs at that moment in
time; * ways to easily and accurately keep track of their performance and use that knowledge to
plan and implement new approaches to reaching their goals; * ways to link directly to family and

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