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Social Media and Healthcare
Program evaluation and research of social media strategies in healthcare
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¿Cómo ayuda la evaluación en la prevención del VIH?

La evaluación puede integrarse en todas las fases de planificación y ejecución de una intervención.

Antes (evaluación formativa, valoración de necesidades): Para entender el contexto de las vidas de los miembros de la comunidad y lo que los pone en riesgo, cómo evitan el riesgo o qué recursos necesitan para reducirlo y mantener la salud y el bienestar. Esto puede ayudar a darle forma al programa y proveer datos basales que ayuden a medir cualquier cambio.
Durante (monitoreo y evaluación del proceso, control de calidad): Para averiguar exactamente qué sucede en la práctica y si el programa opera tal y como fue planeado; para documentar las interacciones con los participantes; para identificar los componentes que sirven mejor y para saber si el programa satisface las necesidades de los participantes. Esta información puede ayudar a desarrollar cambios al programa.
Después (evaluación del impacto y los resultados): Para determinar si el programa tuvo algún efecto a corto y a largo plazo sobre los participantes, sus parejas y familias, sobre el personal del programa y la comunidad. En ese momento, el personal puede reevaluar los objetivos del programa y aprovechar los datos obtenidos para refinar más los programas.

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Regulating Human Subjects Research in the Information Age: Data Mining on Social Networking Sites by Lauren Solberg :: SSRN

Regulating Human Subjects Research in the Information Age: Data Mining on Social Networking Sites by Lauren Solberg :: SSRN | Social Media and Healthcare | Scoop.it

In the 1970s, the Department of Health, Education & Welfare promulgated the first regulations governing research with human subjects. Currently, the Department of Health and Human Services regulates both biomedical and behavioral research with human subjects through 45 C.F.R. § 46, but these regulations have not been revised to address the advances in technology that have changed the ways in which human subjects research is conducted in the 21st century. One of these advances includes researchers’ use of the Internet for various research purposes, including recruiting subjects for their studies, as well as mining data on social networking sites. The issue of data mining on social networking sites for research purposes is becoming more important as researchers in a number of academic fields are collecting research data in this manner. The question of whether such research involves “human subjects” as the term is defined in 45 C.F.R. §46 is important because the answer dictates whether or not such research is subject to federal regulation and oversight.

The U.S. Department of Health and Human Services’ Office for Human Research Protections (OHRP) has previously acknowledged an increased use of the Internet for research purposes, but it has not published any guidance about how the Office understands the issue (nor have any applicable specific regulations been promulgated). Such guidance, and particularly guidance that addresses the use of social networking sites for research purposes, is becoming increasingly more important as researchers are expanding beyond just Facebook and MySpace to recruit research participants and collect data. Furthermore, new social networking sites such as PatientsLikeMe.com are changing the ways in which both behavioral and biomedical researchers recruit and interact with study participants.

This article identifies three key research activities that any new guidance that the OHRP publishes about Internet research should address: (1) the use of the Internet (including social networking sites) to recruit subjects; (2) the use of the Internet to collect personal information via direct interaction with site users; and (3) the collection of personal information from the Internet for research purposes without direct interaction with the owner of the information, i.e. data mining. It further explores recent case law that says that there is no reasonable expectation of privacy with respect to information posted on social networking sites, and discusses the history of privacy in the federal regulations governing research with human subjects. This article concludes that in light of the changes in online social networking and resulting changes in expectations of privacy, as well as the consideration that the Department of Health and Human Services is giving to revising 45 C.F.R. § 46, guidance – or even new regulations – should be drafted that address these key research activities. It furthermore suggests language that would inform researchers and research institutions whether each of these key research activities is subject to the regulations governing research with human subjects.

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Digital revolution lights up Africa with maps, mobiles, money and markets

Digital revolution lights up Africa with maps, mobiles, money and markets | Social Media and Healthcare | Scoop.it
In Africa, necessity is the mother of invention. Instead of sharing photos on Instagram or hobbies on Pinterest, you are more likely to find a service to send money to a rural relative, or to monitor cows' gestation cycle, or for farmers to find out where they can get the best price for their goods. Technology in Africa is foremost about solving problems rather than sharing social trivia, about survival rather than entertainment – although these are flourishing too.

South Africa hosts the third annual Tech4Africa conference, in Johannesburg on Wednesday, attracting innovators and entrepreneurs from a dozen countries. Among the speakers are Sim Shagaya, a Nigerian-born Harvard graduate planning to create the "Amazon of Africa, selling Lagos's increasingly affluent consumer class everything from refrigerators to perfume to cupcakes". His previous venture, DealDey, which offers Groupon-style deals, is now the top-grossing ecommerce site in Nigeria with 350,000 subscribers.

The forum will also be addressed by Mbwana Alliy, the Tanzanian founder of an Africa-focused technology venture capital fund, and Verone Mankou of Congo-Brazzaville, who designed a tablet computer that sells for a third of the price of the iPad. Mankou, 26, has also launched an African smartphone, the Elikia, which means "hope" in the Lingala language.

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CureTogether Blog » Infographics Crowdsourcing effective/popular mental health treatments

CureTogether Blog » Infographics Crowdsourcing effective/popular mental health treatments | Social Media and Healthcare | Scoop.it
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danah boyd | apophenia » omg girls’ bodies are fascinating: embracing the gendered side of quantified self

danah boyd | apophenia » omg girls’ bodies are fascinating: embracing the gendered side of quantified self | Social Media and Healthcare | Scoop.it

Ever since I broke my neck as a teenager, I’ve had a love-hate relationship with my body. Truth be told, I’d much rather be a cyborg or a brain on a stick. I prize my brain, but the rest just tends to get in my way, break down, or reach annoying limits that irritate the hell out of me. I know, I know.. this is a terrible way to think about it – and doesn’t actually make any sense given that the brain isn’t separable from the rest of me – but this is my sci-fi fantasy. So shhh.

Two years ago, when my body went to hell and I spent months in a whirlwind of migraines, vertigo, fatigue, and all-around misery that doctors couldn’t diagnose, I turned to tools and techniques coming out of the quantified self movement in an effort to get some form of insight. I got obsessive about tracking every substance that went into my body, experimenting with what types of food had what affects on my health. I tracked the symptoms I was experiencing, my menstrual cycle, and my weight. I used a Fitbit to keep tabs on every step I took and to monitor my sleep. (I also did a genetics map through 23andme, but purely for curiosity.) I started seeing patterns in my health and found the patterns really helpful as I experimented with non-invasive, non-chemical solutions to my various body woes.

As I explored different services and tools out there, I found myself resisting two classes of quantified practices: 1) anything that got framed around “dieting” and calories; and 2) anything that got described as being about fertility. In short, I wanted nothing to do with the practices that were gendered feminine. Y’see, one of the manifestations of my feminist-y anger with our body image-obsessive culture is to want nothing to do with calories or dieting or other activities that position the female body in an objectifiable state. I used to rebel against these norms by shaving my head and drinking 2 liters of Mountain Dew a day, but both of those practices mysteriously lost their charm in my 20s. Odd, right? ::groan:: Meanwhile, fertility just seemed alien to me. Completely unfairly, I associated fertility tracking with aging women desperate to get pregnant and I didn’t want to frame myself as such.

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Social media and social network analysis (1) by meriem merry on Prezi

Basic concepts and methods about SNA.


Via ukituki, eRelations, cometa23
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European Health Forum Gastein | EHFG

European Health Forum Gastein | EHFG | Social Media and Healthcare | Scoop.it

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.

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Research Conducted Using Data Obtained through Online Communities: Ethical Implications of Methodological Limitations

Research Conducted Using Data Obtained through Online Communities: Ethical Implications of Methodological Limitations | Social Media and Healthcare | Scoop.it

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.

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Breast cancer survivor group is a social movement

Breast cancer survivor group is a social movement | Social Media and Healthcare | Scoop.it
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.

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Use of Social Media by Western European Hospitals: Longitudinal Study

Use of Social Media by Western European Hospitals: Longitudinal Study | Social Media and Healthcare | Scoop.it
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

KEYWORDS

Social media; health 2.0; medicine 2.0; eHealth; participatory health care; patient empowerment; Web 2.0; patient-centered care

 

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SOcial, LOcal, MObile, and the impact on health information

A version of this presentation was delivered for the DIA Clinical Forum at The Hague, in October 2012.

Via Dan Baxter
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Innobasque - Agencia Vasca de la Innovación

Innobasque - Agencia Vasca de la Innovación | Social Media and Healthcare | Scoop.it
La visión de Innobasque es convertir a Euskadi en El Referente europeo en materia de innovación.
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Las comunidades virtuales de pacientes, una herramienta en crecimiento para el soporte del paciente crónico - Forumclínic - Hospital Clínic y Fundación BBVA

Las comunidades virtuales de pacientes, una herramienta en crecimiento para el soporte del paciente crónico - Forumclínic - Hospital Clínic y Fundación BBVA | Social Media and Healthcare | Scoop.it
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.

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W.K. Kellogg Foundation Evaluation Handbook - W.K. Kellogg Foundation

W.K. Kellogg Foundation Evaluation Handbook - W.K. Kellogg Foundation | Social Media and Healthcare | Scoop.it
This handbook provides a framework for thinking about evaluation as a relevant and useful program tool. It was written primarily for project directors who have direct responsibility for the ongoing evaluation of W.K.
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10 tips on using new ICTs for qualitative monitoring and evaluation

10 tips on using new ICTs for qualitative monitoring and evaluation | Social Media and Healthcare | Scoop.it

1) Perception may trump hard data

One discussant raised the question “Do opinions matter more than hard data on services?” noting that perceptions about aid and development may be more important than numbers of items delivered, money spent, and timelines met. Even if an organization is meeting all of its targets, what may matter more is what people think about the organization and its work. Does the assistance they get respond to their needs? Rather than asking “Is the school open?” or “Did you get health care?” it may be more important to ask “How do you feel about health?” Agencies may be delivering projects that are not what people want or that do not respond to their needs, cultures, and so on. It is important to encourage people to talk amongst themselves about their priorities, what they think, encourage viewpoints from people of different backgrounds and see how to pull out information to help inform programs and approaches.

2) It is a complex process

Salon participants noted that people are clearly willing to share stories and unstructured feedback. However, the process of collecting and sorting through stories is unwieldy and far from perfect. More work needs to be done to simplify story-collection processes and make them more tech-enabled. In addition, more needs to be done to determine exactly how to feed the information gleaned back in a structured and organized way that helps with decision-making. One idea was the creation of a “Yelp” for NGOs. Tagging and/or asking program participants to tag photos and stories can help make sense of the data. If videos are subtitled, this can also be of great use to begin making sense of the type of information held in videos. Dotsub, for example, is a video subtitling platform that uses a Wikipedia style subtitling model, enabling crowd sourced video translations into any language.

3) Stories and tags are not enough

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Mobile Health 2012 | Pew Internet & American Life Project

Mobile health has found its market: smartphone owners

Fully 85% of U.S. adults own a cell phone. Half own smartphones, which expands their mobile internet access and enables mobile software applications. This report will provide details about both groups—people who own a cell phone of any kind and the smaller group of people who own smartphones.

One in three cell phone owners (31%) have used their phone to look for health information. In a comparable, national survey conducted two years ago, 17% of cell phone owners had used their phones to look for health advice.

Smartphone owners lead this activity: 52% gather health information on their phones, compared with 6% of non-smartphone owners. Cell phone owners who are Latino, African American, between the ages of 18-49, or hold a college degree are also more likely to gather health information this way.

Health status also plays a role. Caregivers, those who recently faced a medical crisis, and those who experienced a recent, significant change in their physical health are more likely than other cell phone owners to use their phones to look for health information.

Texting is nearly universal, but not for health

A whopping 80% of cell phone owners say they send and receive text messages, but just 9% of cell phone owners say they receive any text updates or alerts about health or medical issues.

Women, those between the ages of 30 and 64, and smartphone owners are more likely than other cell phone owners to have signed up for health text alerts.

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¿Que es Medting? Vídeo

Breve presentación de Medting en Castellano (Evento Teleictus). Plataforma para compartir casos clínicos, imágenes y videos médicos. Integra SNOMED y Pubmed. Plataforma de conocimiento y telemedicina, red social para médicos. La versión enterprise permite crear espacios privados y exclusivos para organizaciones y grupos de trabajo.


Via Ignacio Fernández Alberti
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Elderly still not using apps for health, but tomorrow’s seniors might | mobihealthnews

Elderly still not using apps for health, but tomorrow’s seniors might | mobihealthnews | Social Media and Healthcare | Scoop.it

"As baby boomers age, many are taking greater control over their own healthcare than any generation before them, and mobile technology is be a big part of that movement. But today’s elderly might not be interested in gadgets and apps.

 

“Seniors aren’t using apps for health,” healthcare technology consultant and futurist Mary Cain, managing director of San Francisco-based HT3, said at last week’s Health 2.0 Conference in that same city. In fact, that’s pretty much how Cain led off a session she moderated on digital tools for healthy aging, in case any of the many startup companies and venture capitalists in attendance had any wrong ideas." (...)

 

"While I admittedly don’t talk to as many poor, uneducated people as I perhaps should in this line of work, just about every 60-something I know now has a smartphone and is just as willing to download apps and send text messages as younger adults. But that’s not so much the case with those over the age of 80. That might change as the boomer generation hits their 70s and 80s in the middle of next decade, but I can’t imagine my 93-year-old grandmother ever having a smartphone.

 

(You may remember that I was looking for home monitoring technology for her earlier this year, but my family determined that even the most basic touch-screen tablet would be too confusing for her. We were leaning toward a “passive” wearable monitor that would automatically summon help in case of a fall, but we eventually moved her into an apartment building where all residents are issued “active” monitoring pendants that require the wearer to push a button – not exactly practical when the person is unconscious or disoriented. Old, tired technology that somehow is considered acceptable, just like so many other aspects of healthcare. But I digress.)" (...)


Via Richard Meyer, Agathe Quignot, dbtmobile, Camilo Erazo
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Medical Knowledge for the World | Cureus

Medical Knowledge for the World | Cureus | Social Media and Healthcare | Scoop.it
Cureus is transforming peer reviewed medical publishing: publishing is free, fast (30 days or less), authors retain copyright, reading is free.
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Videogames and Health Improvement: A Literature Review of Randomized Controlled Trials

Videogames and Health Improvement: A Literature Review of Randomized Controlled Trials | Social Media and Healthcare | Scoop.it

 Abstract

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.

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RESEARCH Roundup: Primary health care and social networking - Opportunities to enhance communication

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

Health 2.0 technologies currently in use
Wiki
Fluwiki.com: http://www.fluwikie.com/

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Asegurar el cuidado: Redes, Inmediatez y Autonomía en un Servicio de Teleasistencia Domiciliaria | López | Athenea Digital - Revista de pensamiento e investigación social

Asegurar el cuidado: Redes, Inmediatez y Autonomía en un Servicio de Teleasistencia Domiciliaria
Daniel López

Resumen

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.

Palabras clave

Care; Security; Actor-network theory; STS; Foucault; Telecare; Space

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Asociación T4 de lucha contra el Sida / Hiesaren Aurkako T4 Elkartea | Inicio

Asociación T4 de lucha contra el Sida / Hiesaren Aurkako T4 Elkartea | Inicio | Social Media and Healthcare | Scoop.it
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...
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Las TIC para la Salud - Debates sobre tendencias de la Sociedad de ...

Las TIC para la Salud - Debates sobre tendencias de la Sociedad de la Información y el Conocimiento 20 de Junio 2012 Sevilla...
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