The EHFG is the leading health policy event in the EU and takes place annually. It provides a major platform for decision-makers in various fields of public health & health care. With its wide-ranging four-day programme, the EHFG offers an unparalleled opportunity to exchange information about a broad spectrum of contemporary health issues.
An increasing number of public/private initiatives are exploring novel ways of conducting scientific research, including the use of social media and online collection of self-reported data. Research relying on collection of self-reported data by self-selected participants has known methodological limitations, including selection bias, information bias, and confounding. Such limitations may mean that results and conclusions of research using data obtained through online communities need to be interpreted with caution, as further replication is often required. The findings of research, including their potential actionability, should be communicated to participants in a way that is understandable, accurate, complete, and not misleading. The potential for sharing participants' data with third parties as well as the commercial uses of research findings should be disclosed to participants prior to consent.
A Twitter chat launched a year ago -- known as breast cancer social media -- is proving to be a source of information and sharing for women going through breast cancer.
7:40AM EDT October 23. 2012 - Twitter, perhaps best known lately as a source of Big Bird jokes, might not seem like the first place to look for a breast cancer support group, a boot camp in medical research or the seeds of a social movement.
Yet a weekly Twitter chat on breast cancer, launched just over year ago, has blossomed into all those things and more, participants say.
The online chat, known as BCSM -- or breast cancer social media -- has a growing following of men and women looking to share war stories, empower patients and change the national conversation on breast cancer.
MORE: Health and wellness coverage
Folks who join the chats "are amazing. And they tell each other so," says co-founder and breast cancer survivor Jody Schoger, 58, of The Woodlands, Texas. "They find the best in each other and celebrate that quality."
Robert Miller, a medical oncologist at the Johns Hopkins Kimmel Cancer Center In Baltimore, is a frequent guest expert on BCSM. Miller says he understands how those unfamiliar with Twitter might be "skeptical that exchanging 140-character messages with a group of strangers for an hour every Monday night would be an effective tool. But it really is."
Psychologist Ann Becker-Schutte, a frequent guest expert on BCSM, says the support group take its positive tone from its leaders.
ABSTRACT 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. (J Med Internet Res 2012;14(3):e61) doi:10.2196/jmir.1992
Social media; health 2.0; medicine 2.0; eHealth; participatory health care; patient empowerment; Web 2.0; patient-centered care
Cáncer, VIH-Sida, diabetes y otras enfermedades crónicas son tratadas diariamente en este entorno virtual-profesional del Hospital Clínic, www.forumclinic.org, que se “desvirtualiza” en el acto de entrega de premios, coincidiendo con el día...
forumclín entrega el próximo 19 de octubre los premios del I Concurso de Relatos Cortos "Yo, nosotros, ellos: Historias de pacientes en Internet", una iniciativa que pretende conocer de primera mano como los actores principales de este entorno viven esta forma de relación.
El concurso de relatos ha contado con la participación de más de 100 relatos, tanto de pacientes como de profesionales. El ganador del primer premio es un relato sobre cáncer de mama, titulado "Mi camino". También ha obtenido el primer premio entre los profesionales del Hospital Clínic de Barcelona el cuento "El cazador de orquídeas".
Esta entrega coincide con el Día Mundial de Cáncer de Mama que es precisamente uno de los ámbitos más populares tratados en forumclínic y que cuenta con más de 3 millones de páginas vistas y con más de 700,000 visitas desde su publicación en 2009.
Las redes sociales (web 2.0) ofrecen al enfermo crónico la oportunidad de sentirse acompañado y de conocer las vivencias de personas que están en su misma situación. A los profesionales les proporciona la posibilidad de comunicar pautas de comportamiento, dar consejos y acercarse de manera diferente a los pacientes.
forumclínic permite a muchos pacientes y profesionales de la salud explicar su experiencia. Las personas que presentan patologías crónicas mejoran su salud si asumen su condición, comparten su experiencia, participan activamente en las decisiones médicas que les afectan y adoptan un estilo de vida más saludable.
Se ha comprobado que en las comunidades de pacientes de forumclínic se da un aprendizaje a través de la colaboración entre los participantes: una persona que tiene dudas, entra en forumclínic (entorno que forma parte de un hospital de referencia), observa la comunidad, en un proceso en el que se genera empatía y emoción. Este proceso disminuye el estrés y como en una comunidad de prácticas, aparece la motivación por aprender. Esta filosofía permite a cada persona establecer sus propios objetivos, aprender a su propio ritmo, entrar y salir cuando lo cuando lo desee y aún así sentirse motivada por las respuestas de los demás.
This is a request for help finding people who have had bad experiences with online health resources.
Let me first say that the internet is often a positive force in people's lives.
Pew Internet's research can paint a rather rosy picture: teens are mostly kind to each other online, technology users have more friends than those who stay offline, more people are online than ever before, etc.
But there is another side to the story.
Pew Internet has also documented the fact that, among other groups, people living with disability and those living with chronic health conditions are disproportionately offline. Some people have only dial-up or intermittent access, like at the library or a friend's house, and therefore miss out on important conversations or information.
The internet can also transmit false or misleading information. A 2010 survey found that 3% of all U.S. adults said they or someone they know has been harmed by following medical advice or health information found online (1% minor, 1% moderate, and 1% serious harm). Thirty percent of adults reported being helped.
There are emotional pitfalls online, too. A 2006 Pew Internet survey found that 10% of people seeking health information online said they felt frightened by the serious or graphic nature of what they found online during their last search.
Earlier this year, a reporter contacted me to ask about some Pew Internet data that HealthTap was using on the front page of its site and in slide decks. Pew Internet welcomes accurate citation with attribution. That is a common use of our research, whether it is a for-profit, a non-profit, or a government agency making a case for its work.
Unfortunately, HealthTap’s interpretation of a data point was not accurate (more about why in a minute). I wrote to Ron Gutman, founder and CEO of HealthTap, and he responded pretty aggressively that he stood by his own interpretation of the data. I was taken aback. I have never had someone tell me I wrongly interpreted my own data and I wasn’t sure what to do next.
I corrected the reporter’s impression of the data and decided that was the approach I would take if I were asked about it in the future – fact checking on demand.
Here are the facts about our findings: Pew Internet has historically asked a pair of questions meant to measure the broad impact of the internet on health in the U.S. We have asked the questions of all adults, not just internet users. That respondent audience is important, so keep it in mind:
Background: Electronic health resources are helpful only when people are able to use them, yet there remain few tools available to assess consumers’ capacity for engaging in eHealth. Over 40% of US and Canadian adults have low basic literacy levels, suggesting that eHealth resources are likely to be inaccessible to large segments of the population. Using information technology for health requires eHealth literacy—the ability to read, use computers, search for information, understand health information, and put it into context. The eHealth Literacy Scale (eHEALS) was designed (1) to assess consumers’ perceived skills at using information technology for health and (2) to aid in determining the fit between eHealth programs and consumers. Objectives: The eHEALS is an 8-item measure of eHealth literacy developed to measure consumers’ combined knowledge, comfort, and perceived skills at finding, evaluating, and applying electronic health information to health problems. The objective of the study was to psychometrically evaluate the properties of the eHEALS within a population context. A youth population was chosen as the focus for the initial development primarily because they have high levels of eHealth use and familiarity with information technology tools. Methods: Data were collected at baseline, post-intervention, and 3- and 6-month follow-up using control group data as part of a single session, randomized intervention trial evaluating Web-based eHealth programs. Scale reliability was tested using item analysis for internal consistency (coefficient alpha) and test-retest reliability estimates. Principal components factor analysis was used to determine the theoretical fit of the measures with the data. Results: A total of 664 participants (370 boys; 294 girls) aged 13 to 21 (mean = 14.95; SD = 1.24) completed the eHEALS at four time points over 6 months. Item analysis was performed on the 8-item scale at baseline, producing a tight fitting scale with α = .88. Item-scale correlations ranged from r = .51 to .76. Test-retest reliability showed modest stability over time from baseline to 6-month follow-up (r = .68 to .40). Principal components analysis produced a single factor solution (56% of variance). Factor loadings ranged from .60 to .84 among the 8 items. Conclusions: The eHEALS reliably and consistently captures the eHealth literacy concept in repeated administrations, showing promise as tool for assessing consumer comfort and skill in using information technology for health. Within a clinical environment, the eHEALS has the potential to serve as a means of identifying those who may or may not benefit from referrals to an eHealth intervention or resource. Further research needs to examine the applicability of the eHEALS to other populations and settings while exploring the relationship between eHealth literacy and health care outcomes.
Engaging customers online requires more than just being on the same social networks they are on. You first need to determine what your goals are for social media, how to measure the success of those goals, what tactics to use in your plan, and how to execute that plan. In other words, you need a strategy.
Click on the link for the complete infographic, including details on what options are available in terms of social media platforms, the different values of each, and how they relate to your potential needs.
Additionally, learn about how well they perform with regard to the 4 defined steps in developing a effective social media plan of action, which are:
Define your goals Define your metrics Decide on tactics Execute a successful strategy
So, for those getting started, or anyone who may be re-evaluating an existing social media strategy, check out this infographic that helps inform, organize and achieve online social media goals.
Objective: There are potential benefits of playing videogames for health improvement such as increasing knowledge about health-related issues by playing educational games and fighting a sedentary lifestyle by playing exergames. The number of systematic review articles about “videogames” and “health improvement” is limited. Therefore, the purpose of this study is to review those randomized controlled trials (RCTs) with the topic of “videogames” and “health improvement.”
Materials and Methods: Several electronic databases were searched for RCTs testing videogames on health outcomes that were published in English between January 2000 and April 2012.
Results: Forty-five articles met the eligibility criteria and were categorized into five groups: (1) videogames and patient pain and stress reduction (nine articles), (2) videogames and patient behavioral change (19 articles), (3) videogames and patient rehabilitation (eight articles), (4) videogames as diagnostic tools (three articles), and (5) videogames and cognitive ability (six articles).
Conclusions: Most of the articles have shown promising results in using videogames within various fields of healthcare. Although exergames are the most prominent choice regarding health improvement, videogames have the potential to be used as a pain management tool, diagnostic tool, or educational tool. They also can be used as a facilitator in physical rehabilitation or cognitive loss prevention. More RCTs are needed to fully uncover the benefits of using videogames for improving patients' health.
Current limitations and challenges While many primary health care professionals understand the benefits of using emerging technologies, uptake is generally low.11,12 Common barriers include a lack of ongoing and comprehensive training, costs associated with buying or upgrading equipment, concerns about a potential increase in workload and a preference for the traditional approach to medicine and collaboration.11,12,13,14 Learning to adopt these new technologies into everyday practice can be frustrating and is likely to require a large investment of time when first implemented.7
The main issue pertaining to blogs and wikis is the lack of moderation. Any individual is able to upload and edit information, which may have a negative impact on accuracy.4,7,15 As users have the option of being anonymous, it is difficult to make judgments regarding the credibility of the available information.7 Podcasts typically involve large file sizes, which may exclude individuals with unreliable internet connections, such as those in remote areas of Australia.7
Future directions Primary health care professionals need to be actively involved in the design and implementation of these tools in order to address the identified barriers. The design needs to be streamlined, integrated and interoperable, as busy primary health care providers do not have time to use a variety of technologies that need to be opened in separate windows and operated differently.7,12,16,17 In order to make these technologies user-friendly, they could be integrated into one application, which can be customised according to need. Financial incentives are likely to encourage adoption of new technologies,12,13,14,18,19 particularly in rural and remote areas where access to technology is poor9 and smaller practices, where the relative financial burden will be greater.20 In remote areas, the poorer internet access and infrastructure issues would need to be addressed.9,12 Ongoing and comprehensive training and technical support is essential, particularly in rural settings where staff turnover is high and external sources of IT support are limited.9,12
Asegurar el cuidado: Redes, Inmediatez y Autonomía en un Servicio de Teleasistencia Domiciliaria Daniel López
Esta tesis es un estudio etnográfico sobre un servicio de teleasistencia domiciliaria en el que se analiza cómo se organiza el cuidado a distancia e inmediato ante cualquier eventualidad, cómo se corporeiza y práctica la autonomía a través del uso de este servicio, y cómo el hogar y su forma de habitarlo se transforma con el uso de la teleasistencia. Estas tres preguntas tienen como objetivo final dilucidar qué desinstitucionalización se abre con la TAD. Concretamente, la tesis que sostiene el trabajo es que la desinstitucionalización puede interpretarse, a la luz de los resultado de la etnografía, como el paso de un disciplinamiento del cuidado a un aseguramiento del cuidado.
Care; Security; Actor-network theory; STS; Foucault; Telecare; Space
La asociación T4 de lucha contra el sida / hiesaren aurkako T4 Elkartea es una entidad sin ánimo de lucro vizcaína que nace en 1992 y que trabajamos el autoapoyo, la intervención social (prevención, asistencia e incorporación social), el fortalecimiento...
Physicians no longer control information. While the idea of a patient bringing new research to her doctor isn’t a new phenomenon, in the broader historical context it’s huge. For the better part of civilization our role as physician has centered around privileged access to information and knowledge. But the web has created a type of disintermediation. The face-to-face encounter with a physician is evolving as a more narrowly defined element in an individual’s quest to understand their condition and get better. Access to information is the bedrock of the health 2.0 movement.
There’s too much to know. There was once a time when physicians could get their hands around what they needed to know. You’d go to the mailbox and pick up that 200 page journal and you were all set. Not so much anymore.
And honestly, a part of me felt bad. I’m a pediatric subspecialist – I’m supposed to be on top of this stuff. But had I read that that paper, there would have been another patient with with a newly released paper. There’s simply too much to know.
Information will find us. While we used to be dependent upon search in order to get the information we need, information now finds us through our social networks just as this mother did. And going forward, information will find us based on our context. The right information will find us on our smart phones depending upon where we are, what we’re doing, or what clinic we happen to be in. Social media visionary Shel Israel has suggested the last decade was about conversation, this coming decade will be about context.
'Map of Medicine Healthguides shows you the ideal, evidence-based patient journey for common and important conditions. It is a high-level overview that can be shared by patients and healthcare providers.'
Although individual variations persist, things have changed. Today, medicine has discarded the norm of evasion and deceit. As we enter the age of electronic medical records, with access to patient information almost a civil right, it is good to remember that communication patterns change in ways that reflect different community expectations and values.
I remember this history when I hear doctors object to making lab reports or visit notes available to patients because they may cause pain and anxiety. No doubt they will in some cases, but then pain and anxiety are part of the human condition and are as likely to be produced by a sense of ignorance and powerlessness as by knowledge. The difference turns on who decides. People have myriad ways of protecting themselves from things they don't want to know. Making information freely available doesn't necessarily mean that patients will be forced to learn what they'd rather ignore. The Internet is a model here: Some people devour the plethora of medical information; others avoid it like the plague. If any generalization suffices, to treat patients like adults requires that we, not a well-meaning professional, make the choice between more and less knowledge.
I suspect that few doctors who are troubled by embracing free access to medical records will take this argument head on. In our society, common respect for autonomy is intimately linked to free choice. Rather, opposition to making records available in fact instead of theory will evoke a range of subsidiary concerns, some seem weighty, others insubstantial. The pioneering report in this issue by Delbanco and colleagues (1) provides data showing that many apprehensions about sharing information fade with actual experience.
One of the first medical research fiascoes I learned about was the Tuskegee syphilis experiment. Are today’s patients headed unknowingly for something similar online? The Internet is a remarkable information resource and makes it easy to share with others. But while you search and share online, you’re giving away information about you and your health. How is your health data being used, and by whom? In 1932, the U.S. Public Health Service and Tuskegee Institute began a longitudinal study of 600 African-American sharecroppers — 399 of whom had syphilis. At the time, there was no cure. When penicillin became widely available as standard therapy after World War II, the scientists continued to observe and didn’t treat syphilitic patients, leading to further illness for the patients, their spouses and children. The study continued until 1972, six years after Dr. Peter Buxtun raised ethical concerns. As a result of Tuskegee, the Belmont Report and Office for Human Research Protections set new standards for medical research: Establish boundaries between research and clinical practice; Respect for persons [patients] and their autonomy; Beneficence [doing good]; Justice [fair allocation of resources]. These standards are routinely applied in research to: Informed consent Understanding risks and benefits of participation Subject selection
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