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(Crowd)Funding Patients to Attend Medical Conferences?…Now That’s a Great Idea - The Doctor Weighs In

’m a physician and have spent a lot of time over the years attending Medical Conferences talking to my colleagues about stuff we can do for and to patients. As I look back on these meetings, I must say, with few exceptions, the folks we were talking about – the patients – were not there.

Here’s a recent example. I attended a Patient Engagement panel at a big conference on Accountable Care Organizations in Washington DC this summer. There were four speakers and a moderator – all health care people – not a patient in sight. Imagine spending an hour or so debating how to engage patients when there were no actual patients on the panel. Pretty funny, except it isn’t.

Some folks would argue that we are all patients, so why do we need more patients to attend medical meetings. Because, I would argue, even though I am a patient and my doctor and nurse friends are patients, we are also health professionals. We understand the jargon. We know what to expect from the illness and the treatment. We know how to work the system. And, probably most significant of all, our doctors know we are doctors and nurses and they treat us differently.

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Social Media and Healthcare Evaluation
Program evaluation and research of social media strategies in healthcare
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Patient Privacy in a Mobile World: A Framework to Address Privacy Law Issues in Mobile Health | K4Health

Patient Privacy in a Mobile World: A Framework to Address Privacy Law Issues in Mobile Health | K4Health | Social Media and Healthcare Evaluation | Scoop.it
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Protecting personal health information that is collected and transmitted over mobile devices has been cited as an essential factor to bringing mHealth to scale. Led by the mHealth Alliance, the Thomson Reuters Foundation, Merck, and Baker & McKenzie this report aims to increase the understanding of privacy and security policies related to the use of mHealth.

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Can Cell Phones Improve Latinas’ Health? - COLORLINES

Can Cell Phones Improve Latinas’ Health? - COLORLINES | Social Media and Healthcare Evaluation | Scoop.it
From cooking tips to domestic violence resources, text messages in Spanish from Únete Latina are helping some of Fresno’s Latinas take good care of themselves.
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Go where the patients are: Why this doctor is active on social media

Go where the patients are: Why this doctor is active on social media | Social Media and Healthcare Evaluation | Scoop.it
Why am I online blogging or pushing content through my website? Because my patients are there.
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Living the quantified self: the realities of self-tracking for health

Living the quantified self: the realities of self-tracking for health | Social Media and Healthcare Evaluation | Scoop.it
The end of 2012 and the dawning of a new year brought with it a multitude of news reports and blogs on the phenomenon of the quantified self or using self-tracking tools for health promoting purpos...
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Patient-Computer Dialogue: A Hope for the Future

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Dialogue between physician and patient continues to be the mainstay of clinical medicine. During the clinical visit, the physician endeavors to establish rapport, develop bonds of mutual respect and trust, obtain information relevant to the patient's medical problems and general health, and communicate information for the patient's immediate and long-range use. In turn, the patient can communicate personal preferences to the physician, and the two can work together to develop an approach to treatment that is consistent with both the patient's wishes and the dictates of medical science. However, a detailed, thoughtful clinical interview requires a great deal of time, and too often medical histories are inadequate and counseling is insufficient because of limitations of time beyond the physician's control.1-4

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Couples, the Internet, and Social Media | Pew Research Center's Internet & American Life Project

How American couples use digital technology to manage life, logistics, and emotional intimacy within their relationships
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As technology becomes more deeply integrated into people’s lives, couples are feeling both the positive and negative effects of digital communications tools in their relationships.

Fully 27% of online adults who are married or in committed relationships say that the internet has had an impact on their relationships; and a majority of them say that impact has been positive. However, technology is also seen as a negative source of distraction in some relationships; 25% of cell owners in serious relationships say the phone distracts their spouse or partner when they are alone together.

Technology makes itself felt in many ways in relationships – in how couples communicate, grow closer, plan, fight and make up. A new report from the Pew Research Center looks at how technology matters in the lives of married or partnered adults. Some of the main findings from the report explore the both the good and the bad.

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Give the Data to the People

Give the Data to the People | Social Media and Healthcare Evaluation | Scoop.it
Results of clinical trials should be accessible to all scientists.
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Globalization and Health | Abstract | Government capacities and stakeholders: what facilitates ehealth legislation?

Newly established high-technology areas such as eHealth require regulations regarding the interoperability of health information infrastructures and data protection.
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interoperability of health information infrastructures and data protection. It is argued that government capacities as well as the extent to which public and private organizations participate in policy-making determine the level of eHealth legislation. Both explanatory factors are influenced by international organizations that provide knowledge transfer and encourage private actor participation.

Methods

Data analysis is based on the Global Observatory for eHealth - ATLAS eHealth country profiles which summarizes eHealth policies in 114 countries. Data analysis was carried out using two-component hurdle models with a truncated Poisson model for positive counts and a hurdle component model with a binomial distribution for zero or greater counts.

Results

The analysis reveals that the participation of private organizations such as donors has negative effects on the level of eHealth legislation. The impact of public-private partnerships (PPPs) depends on the degree of government capacities already available and on democratic regimes. Democracies are more responsive to these new regulatory demands than autocracies. Democracies find it easier to transfer knowledge out of PPPs than autocracies. Government capacities increase the knowledge transfer effect of PPPs, thus leading to more eHealth legislation.

Conclusions

All international regimes -- the WHO, the EU, and the OECD -- promote PPPs in order to ensure the construction of a national eHealth infrastructure. This paper shows that the development of government capacities in the eHealth domain has to be given a higher priority than the establishment of PPPs, since the existence of some (initial) capacities is the sine qua non of further capacity building.

 
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Twitter and nursing research: how diffusion of innovation theory can help uptake - Archibald - 2014 - Journal of Advanced Nursing - Wiley Online Library

Twitter and nursing research: how diffusion of innovation theory can help uptake - Archibald - 2014 - Journal of Advanced Nursing - Wiley Online Library | Social Media and Healthcare Evaluation | Scoop.it
All is not well for nursing in the new world. The use of social media to share research, access information and build professional networks – although gaining in popularity – has been met mostly with a slow response from those in nursing and its research (Ferguson 2013). Twitter is used by over 550 million people, with 135,000 new users every day (Statistics Brain 2012). Approximately 11% of nurses use Twitter compared with 20% of adults – which places nurses a year behind the general population's usage (Robinson 2013). This inertia is curious, given that reputable health organizations, such as the World Health Organization, now use Twitter (Redfern 2013). Do nurses understand the potential benefits of Twitter? With mainstream popularity and increasing reliance in daily social life, Twitter can allow nurse researchers to connect directly, rapidly and cheaply with communities, disseminate information, and promote translation of research into practice and policy. It has also been found to be effective in engaging with and recruiting potentially hard-to-reach populations (O'Connor et al. 2014). This provides huge potential for methods and dissemination and broadens our understanding of change. Academic institutions now have to consider the merits of ‘virtual impact’ alongside traditional metrics of evaluation, such as publications. As Ferguson lamented in JAN: ‘it is time for the nursing profession to leverage social media’ (2013, p. 745). However, identifying this need does nothing to address how nurses can use Twitter better. Diffusion of Innovations Theory can help.
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bioethx

bioethx | Social Media and Healthcare Evaluation | Scoop.it
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BioethxChat is a live tweetchat account, started in October of 2013 by @jchevinsky to reach an interdisciplinary group of students, professionals, and members of the general public. Live chats are hosted every Monday at 8:30PM EST (7:30PM CDT, 5:30PM PDT, 12:30AM GMT).  

 

Topics cover a large range of disciplines, but specifically focus on the intersection of science and ethics. You can follow BioethxChat by searching for @BioethxChat on Twitter, or through the link below:

https://twitter.com/BioethxChat

 

Join the chat by using the hashtag '#bioethx'.

 

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A checklist for digital inclusion - if we do these things, we’re doing digital inclusion

A checklist for digital inclusion - if we do these things, we’re doing digital inclusion | Social Media and Healthcare Evaluation | Scoop.it
As with most of our work at the Government Digital Service, we release things early for review and comment. The digital inclusion team, set up last year, would like to share and get your feedback o...
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What happens when patients know more than their doctors? Experiences of health interactions after diabetes patient education: a qualitative patient-led study -- Snow et al. 3 (11) -- BMJ Open

What happens when patients know more than their doctors? Experiences of health interactions after diabetes patient education: a qualitative patient-led study -- Snow et al. 3 (11) -- BMJ Open | Social Media and Healthcare Evaluation | Scoop.it
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Objective To explore the impact of patient education on the lives of people with diabetes, including the effect on interactions with doctors and other healthcare professionals.

Design Qualitative user-led study using longitudinal interviews and 146 h of participant observation. Data were analysed using a narrative approach.

Participants 21 patients with type 1 diabetes, those either about to attend a patient education course or those who had completed the course in the previous 10 years.

Setting Established patient education centres in three UK teaching hospitals teaching the Dose Adjustment for Normal Eating (DAFNE) course.

Results Both postcourse and several years later, most participants spoke of the experience of taking part in education as life-changingly positive. It helped them understand how to gain control over a very complex disease and freed them from dependence on medical advice and restrictive regimes. However, interactions within the health system following patient education could be fraught. Participants emerged from the course with greater condition-specific knowledge than many of the healthcare professionals they encountered. When these professionals did not understand what their patients were trying to do and were uncomfortable trusting their expertise, there could be serious consequences for these patients' ability to continue effective self-management.

Conclusions Patients who have in-depth knowledge of their condition encounter problems when their expertise is seen as inappropriate in standard healthcare interactions, and expertise taught to patients in one branch of medicine can be considered non-compliant by those who are not specialists in that field. Although patient education can give people confidence in their own self-management skills, it cannot solve the power imbalance that remains when a generalist healthcare professional, however well meaning, blocks access to medication and supplies needed to manage chronic diseases successfully. There is a role for those involved in primary and hospital care, including those supporting and training healthcare professionals, to recognise these problems and find ways to acknowledge and respect chronic patients' biomedical and practical expertise.

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The case for “connected health” at home

The case for “connected health” at home | Social Media and Healthcare Evaluation | Scoop.it
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Communication and health monitoring technology and devices will enhance the potential for improved home health care services over the next decade. The technology exists to improve patients’ access to specialized care, to monitor in-home risks for patients who have dementia or limitations in activities of daily living, and to minimize annoyances such as delays and long waiting times. Certain barriers must be addressed, however, such as third-party reimbursement restrictions, regulatory issues, and technologic limitations. Innovative clinicians will find ways to use these technologies to improve care while lowering costs and increasing value.

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Nancy Lublin | Speaker | TED

Nancy Lublin | Speaker | TED | Social Media and Healthcare Evaluation | Scoop.it
TED is a nonprofit devoted to Ideas Worth Spreading - through TED.com, our annual conferences, the annual TED Prize and local TEDx events.
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Dialog wearable epilepsy aid by Artefact predicts seizures

Dialog wearable epilepsy aid by Artefact predicts seizures | Social Media and Healthcare Evaluation | Scoop.it
This wearable design concept helps epilepsy sufferers manage symptoms, predict potential seizures and alert passersby or loved ones when having a fit.
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Societies | Free Full-Text | Visualized and Interacted Life: Personal Analytics and Engagements with Data Doubles

Societies | Free Full-Text | Visualized and Interacted Life: Personal Analytics and Engagements with Data Doubles | Social Media and Healthcare Evaluation | Scoop.it
A field of personal analytics has emerged around self-monitoring practices, which includes the visualization and interpretation of the data produced. This paper explores personal analytics from the perspective of self-optimization, arguing that the ways in which people confront and engage with visualized personal data are as significant as the technology itself. The paper leans on the concept of the “data double”: the conversion of human bodies and minds into data flows that can be figuratively reassembled for the purposes of personal reflection and interaction. Based on an empirical study focusing on heart-rate variability measurement, the discussion underlines that a distanced theorizing of personal analytics is not sufficient if one wants to capture affective encounters between humans and their data doubles. Research outcomes suggest that these explanations can produce permanence and stability while also profoundly changing ways in which people reflect on themselves, on others and on their daily lives.
bacigalupe's insight:

Abstract: A field of personal analytics has emerged around self-monitoring practices, which includes the visualization and interpretation of the data produced. This paper explores personal analytics from the perspective of self-optimization, arguing that the ways in which people confront and engage with visualized personal data are as significant as the technology itself. The paper leans on the concept of the “data double”: the conversion of human bodies and minds into data flows that can be figuratively reassembled for the purposes of personal reflection and interaction. Based on an empirical study focusing on heart-rate variability measurement, the discussion underlines that a distanced theorizing of personal analytics is not sufficient if one wants to capture affective encounters between humans and their data doubles. Research outcomes suggest that these explanations can produce permanence and stability while also profoundly changing ways in which people reflect on themselves, on others and on their daily lives.

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Decision Aid Library Inventory - Patient Decision Aids - Ottawa Hospital Research Institute

Decision Aid Library Inventory - Patient Decision Aids - Ottawa Hospital Research Institute | Social Media and Healthcare Evaluation | Scoop.it
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The Patient, the Provider, and Participatory Medicine—Are We a House Divided? | Journal of Participatory Medicine

The Patient, the Provider, and Participatory Medicine—Are We a House Divided? | Journal of Participatory Medicine | Social Media and Healthcare Evaluation | Scoop.it
What does "participatory medicine" really mean? Widely varying interpretations have sometimes led to confusion and conflict, and threaten to limit our progress in advancing health.
bacigalupe's insight:

I may have a provider bias, but I don’t believe it is productive for our organization to debate whether participatory medicine is primarily about the doctor/patient interface or whether it should focus on patient self-care. Both perspectives are important and are not in conflict. As fellow JoPM Editor Alan Greene is fond of saying, “There is room at the table for all.” It is no more appropriate to focus all our energy on how to promote self-care than it would be to ignore it completely! On the other hand, helping patients navigate more effectively by discussing and promoting a collaborative doctor-patient relationship needs time and attention from the Society of Participatory Medicine as well as from the Journal and other organizational conduits. This definition was published in the first editorial of the Journal of Participatory Medicine in October, 2009: Participatory medicine is a cooperative model of health care that encourages, supports, and expects active involvement by all parties (clinicians, patients, caregivers, administrators, payers, and communities) in the prevention, management, and treatment of disease and disability and the promotion of health.[3] This statement, a balanced view, is what we are about.

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Implementing Family-Centered Rounds | Patient- and Family-Centered Rounds

Implementing Family-Centered Rounds | Patient- and Family-Centered Rounds | Social Media and Healthcare Evaluation | Scoop.it
We are happy to share what we have learned from our experience at Cincinnati Children’s and from teaching patient- and family-centered rounds at conferences and workshops.
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Each hospital’s setting is unique, so there is no best way to implement patient- and family-centered rounds.  We are happy to share what we have learned from our experience at Cincinnati Children’s and from teaching patient- and family-centered rounds at conferences and workshops.

Understanding each other’s points of view is an essential starting point.   We have learned that when physicians, nurses, allied health professionals and patients and their families discuss patient- and family-centered rounds, they are more likely to implement them.

We have created a facilitator guide and a series of video vignettes to assist you in your implementation strategy.  We hope these tools lead to a rich discussion among you, your colleagues and your patients and their families and will assist you in successful implementation of patient- and family-centered rounds at your institution. 

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"Estandarización de los perfiles profesionales en la gestión de la inno" by Ildefonso Hervás, Gloria Palomar et al.

Catorce grandes hospitales del sistema de salud español disponen de unidades de apoyo a la innovación (UAI). Estas unidades están integradas en la Red de Innovación en Tecnologías Médicas y Sanitarias (Red ITEMAS), nacida en el año 2009 como iniciativa del Instituto de Salud Carlos III.
“La innovación desde entidades sanitarias empieza a dar sus primeros frutos. Dado que su gestión supone un conjunto de tareas especializadas desarrolladas por un colectivo profesional aún muy heterogéneo, resulta necesario establecer aquellos parámetros transversales sobre la forma de organizar los equipos y estandarizar los roles principales en las UAI.”
En este artículo, los autores han realizado un estudio de la composición y funciones de las diferentes unidades de apoyo, con el objetivo de estandarizar los perfiles profesionales necesarios en dichas unidades. Y se propone una estructura formada por un coordinador y siete perfiles específicos.
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Can I get a retweet please? Health research recruitment and the twittesphere. [J Adv Nurs. 2014]

PubMed comprises more than 23 million citations for biomedical literature from MEDLINE, le science journals, and online books. Citationxt content from PubMed Central and publisher web sites.

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Patient portals for hospitalized patients: Do they make sense?

Patient portals for hospitalized patients: Do they make sense? | Social Media and Healthcare Evaluation | Scoop.it
These five points are important to remember when we talk about patient portal use among hospitalized patients.
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The Effects on Health Behavior and Health Outcomes of Internet-Based Asynchronous Communication Between Health Providers and Patients With a Chronic Condition: A Systematic Review

The Effects on Health Behavior and Health Outcomes of Internet-Based Asynchronous Communication Between Health Providers and Patients With a Chronic Condition: A Systematic Review
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Social media use by health care profess - PubMed Mobile

AuthorsHamm MP, et al. Show all Journal Acad Med. 2013 Sep;88(9):1376-83. doi: 10.1097/ACM.0b013e31829eb91c. Affiliation Abstract PURPOSE: To conduct a scoping review of the literature on social media use by health care professionals and trainees. METHOD: The authors searched MEDLINE, CENTRAL, ERIC, PubMed, CINAHL Plus Full Text, Academic Search Complete, Alt Health Watch, Health Source, Communication and Mass Media Complete, Web of Knowledge, and ProQuest for studies published between 2000 and 2012. They included those reporting primary research on social media use by health care professionals or trainees. Two reviewers screened studies for eligibility; one reviewer extracted data and a second verified a 10% sample. They analyzed data descriptively to determine which social media tools were used, by whom, for what purposes, and how they were evaluated. RESULTS: The authors included 96 studies in their review. Discussion forums were the most commonly studied tools (43/96; 44.8%). Researchers more often studied social media in educational than practice settings. Of common specialties, administration, critical appraisal, and research appeared most often (11/96; 11.5%), followed by public health (9/96; 9.4%). The objective of most tools was to facilitate communication (59/96; 61.5%) or improve knowledge (41/96; 42.7%). Thirteen studies evaluated effectiveness (13.5%), and 41 (42.7%) used a cross-sectional design. CONCLUSIONS: These findings provide a map of the current literature on social media use in health care, identify gaps in that literature, and provide direction for future research. Social media use is widespread, particularly in education settings. The versatility of these tools suggests their suitability for use in a wide range of professional activities. Studies of their effectiveness could inform future practice.
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"Digital Illness Narratives: A New Form of Health Communication" by Jofen Han and Jo Wiley

Social media has dramatically affected the way information is accessed and circulated. Social networking sites continue to create on-line communities where every participant plays an active role in seeking and sharing information.
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Social media has dramatically affected the way information is accessed and circulated. Social networking sites continue to create on-line communities where every participant plays an active role in seeking and sharing information. While social networks have profoundly impacted different industries in terms of communication between business-to-business and business-to-consumer interaction, they also have had significant impact on many stakeholders in the healthcare communication system. This report describes how a non-profit social networking site called CaringBridge can help patients communicate about their health challenges and gain support though their writings. When traditional “Illness Narratives” (a patient’s reflective writing about his/her illness) become interactive and conversational in a digital platform, the selfexpression and connectivity taking place in an on-line social community contribute immensely to the patient’s health journey.

   

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Marie Ennis-O'Connor's comment, January 6, 8:01 PM
Also worth considering - what health care providers can learn from patient narratives http://ow.ly/sko0y