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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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Developing a Framework to Generate Evidence of Health Outcomes From Social Media Use in Chronic Disease Management

Developing a Framework to Generate Evidence of Health Outcomes From Social Media Use in Chronic Disease Management | Social Media and Healthcare Evaluation | Scoop.it
Background: While there is an abundance of evidence-based practice (EBP) recommendations guiding management of various chronic diseases, evidence suggesting best practice for using social media to improve health outcomes is inadequate. The variety of social media platforms, multiple potential uses, inconsistent definitions, and paucity of rigorous studies, make it difficult to measure health outcomes reliably in chronic disease management. Most published investigations report on an earlier generation of online tools, which are not as user-centered, participatory, engaging, or collaborative, and thus may work differently for health self-management.
Objective: The challenge to establish a sound evidence base for social media use in chronic disease starts with the need to define criteria and methods to generate and evaluate evidence. The authors’ key objective is to develop a framework for research and practice that addresses this challenge.
Methods: This paper forms part of a larger research project that presents a conceptual framework of how evidence of health outcomes can be generated from social media use, allowing social media to be utilized in chronic disease management more effectively. Using mixed methods incorporating a qualitative literature review, a survey and a pilot intervention, the research closely examines the therapeutic affordances of social media, people with chronic pain (PWCP) as a subset of chronic disease management, valid outcome measurement of patient-reported (health) outcomes (PRO), the individual needs of people living with chronic disease, and finally translation of the combined results to improve evidence-based decision making about social media use in this context.
Results: Extensive review highlights various affordances of social media that may prove valuable to understanding social media’s effect on individual health outcomes. However, without standardized PRO instruments, we are unable to definitively investigate these effects. The proposed framework that we offer outlines how therapeutic affordances of social media coupled with valid and reliable PRO measurement may be used to generate evidence of improvements in health outcomes, as well as guide evidence-based decision making in the future about social media use as part of chronic disease self-management.
Conclusions: The results will (1) inform a framework for conducting research into health outcomes from social media use in chronic disease, as well as support translating the findings into evidence of improved health outcomes, and (2) inform a set of recommendations for evidence-based decision making about social media use as part of chronic disease self-management. These outcomes will fill a gap in the knowledge and resources available to individuals managing a chronic disease, their clinicians and other researchers in chronic disease and the field of medicine 2.0.
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On the usage of health records for the design of virtual patients: a systematic review

On the usage of health records for the design of virtual patients: a systematic review | Social Media and Healthcare Evaluation | Scoop.it
bacigalupe's insight:

Background

The process of creating and designing Virtual Patients for teaching students of medicine is an expensive and time-consuming task. In order to explore potential methods of mitigating these costs, our group began exploring the possibility of creating Virtual Patients based on electronic health records. This review assesses the usage of electronic health records in the creation of interactive Virtual Patients for teaching clinical decision-making.

Methods

The PubMed database was accessed programmatically to find papers relating to Virtual Patients. The returned citations were classified and the relevant full text articles were reviewed to find Virtual Patient systems that used electronic health records to create learning modalities.

Results

A total of n=362 citations were found on PubMed and subsequently classified, of which n=28 full-text articles were reviewed. Few articles used unformatted electronic health records other than patient CT or MRI scans. The use of patient data, extracted from electronic health records or otherwise, is widespread. The use of unformatted electronic health records in their raw form is less frequent. Patient data use is broad and spans several areas, such as teaching, training, 3D visualisation, and assessment.

Conclusions

Virtual Patients that are based on real patient data are widespread, yet the use of unformatted electronic health records, abundant in hospital information systems, is reported less often. The majority of teaching systems use reformatted patient data gathered from electronic health records, and do not use these electronic health records directly. Furthermore, many systems were found that used patient data in the form of CT or MRI scans. Much potential research exists regarding the use of unformatted electronic health records for the creation of Virtual Patients.

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Portal de Iniciativas de eSalud | eHealth Initiatives in Latin America Database

Portal de Iniciativas de eSalud | eHealth Initiatives in Latin America Database | Social Media and Healthcare Evaluation | Scoop.it
bacigalupe's insight:

Access information on projects from institutions that use information and communication technology (ICT)
in health. PAHO/WHO

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The Era Of Big Data And Its Implications For Big Pharma

The Era Of Big Data And Its Implications For Big Pharma | Social Media and Healthcare Evaluation | Scoop.it
Health Affairs is the leading peer-reviewed journal at the intersection of health, health care, and policy.
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Medicine X, as a Patient Centric Conference, has Set the Bar Higher

Medicine X, as a Patient Centric Conference, has Set the Bar Higher | Social Media and Healthcare Evaluation | Scoop.it
A personal reflection on attending Stanford Medicine's "Medicine X" conference by Symplur ... the world's leading healthcare social media analytics company.
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BMC Pediatrics | Full text | A systematic review of the use and effectiveness of social media in child health

Social media use is highly prevalent among children, youth, and their caregivers, and its use in healthcare is being explored. The objective of this study was to conduct a systematic review to determine: 1) for what purposes social media is being used in child health and its effectiveness; and 2) the attributes of social media tools that may explain how they are or are not effective.
bacigalupe's insight:
Background

Social media use is highly prevalent among children, youth, and their caregivers, and its use in healthcare is being explored. The objective of this study was to conduct a systematic review to determine: 1) for what purposes social media is being used in child health and its effectiveness; and 2) the attributes of social media tools that may explain how they are or are not effective.

Methods

We searched Medline, CENTRAL, ERIC, PubMed, CINAHL, Academic Search Complete, Alt Health Watch, Health Source, Communication and Mass Media Complete, Web of Knowledge, and Proquest Dissertation and Theses Database from 2000–2013. We included primary research that evaluated the use of a social media tool, and targeted children, youth, or their families or caregivers. Quality assessment was conducted on all included analytic studies using tools specific to different quantitative designs.

Results

We identified 25 studies relevant to child health. The majority targeted adolescents (64%), evaluated social media for health promotion (52%), and used discussion forums (68%). Most often, social media was included as a component of a complex intervention (64%). Due to heterogeneity in conditions, tools, and outcomes, results were not pooled across studies. Attributes of social media perceived to be effective included its use as a distraction in younger children, and its ability to facilitate communication between peers among adolescents. While most authors presented positive conclusions about the social media tool being studied (80%), there is little high quality evidence of improved outcomes to support this claim.

Conclusions

This comprehensive review demonstrates that social media is being used for a variety of conditions and purposes in child health. The findings provide a foundation from which clinicians and researchers can build in the future by identifying tools that have been developed, describing how they have been used, and isolating components that have been effective.

Keywords: 

Social media; Pediatrics; Systematic review


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Weight loss in Social Media

Weight loss in Social Media | Social Media and Healthcare Evaluation | Scoop.it
Weight loss and Web 2.0. Collection of weight loss related blogs, podcasts, slideshows, mobile applications and community sites to help you keep yourself up-to-date.
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Transcript of Chat with Gonzalo Bacigalupe (with images, tweets) · hchlitss

A Social Media Story storified by hchlitss
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Midnight Friends: How Wired Patients Are Transforming Chronic Illness

Midnight Friends: How Wired Patients Are Transforming Chronic Illness | Social Media and Healthcare Evaluation | Scoop.it
Over the years, Deborah Haber, plagued by a rare and painful medical condition, has discovered a lifeline that's lifted her outlook and improved her health. It combines the best qualities of a mother, best friend, therapist and trusted doctor to help her cope: it's social media.
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Esteve Foundation | El periodismo biomédico en la era 2.0

Esteve Foundation | El periodismo biomédico en la era 2.0 | Social Media and Healthcare Evaluation | Scoop.it
bacigalupe's insight:

This publication stems from the international symposium held in Barcelona in September 2011, which brought together more than 70 scientific communications professionals. Moderated by Vladimir de Semir, director of the OCC, the first block of the day addressed the challenges posed by the Internet for biomedical journalists, something that Connie St Louis, from BBC Radio 4, examines closely as Director of the Masters in Biomedical Journalism at City University, London. In an age dominated by the communication of information, the journalist must resurrect their role of investigating and questioning that which surrounds them.

 
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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
bacigalupe's insight:

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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The Legal And Ethical Concerns That Arise From Using Complex Predictive Analytics In Health Care

The Legal And Ethical Concerns That Arise From Using Complex Predictive Analytics In Health Care | Social Media and Healthcare Evaluation | Scoop.it
Predictive analytics, or the use of electronic algorithms to forecast future events in real time, makes it possible to harness the power of big data to improve the health of patients and lower the cost of health care. However, this opportunity raises policy, ethical, and legal challenges. In this article we analyze the major challenges to implementing predictive analytics in health care settings and make broad recommendations for overcoming challenges raised in the four phases of the life cycle of a predictive analytics model: acquiring data to build the model, building and validating it, testing it in real-world settings, and disseminating and using it more broadly. For instance, we recommend that model developers implement governance structures that include patients and other stakeholders starting in the earliest phases of development. In addition, developers should be allowed to use already collected patient data without explicit consent, provided that they comply with federal regulations regarding research on human subjects and the privacy of health information.
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Planning for a New Decision Aid: Mammography | Informed Medical Decisions Foundation

Planning for a New Decision Aid: Mammography | Informed Medical Decisions Foundation | Social Media and Healthcare Evaluation | Scoop.it
Breast cancer screening with mammography is a highly personal health decision for women age 40 and older. There are few decision aids to help guide women about
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Risks to patient safety associated with implementation of electronic applications for medication management in ambulatory care - a systematic review

bacigalupe's insight:

The objective was to find evidence to substantiate assertions that electronic applications for medication management in ambulatory care (electronic prescribing, clinical decision support (CDSS), electronic health record, and computer generated paper prescriptions), while intended to reduce prescribing errors, can themselves result in errors that might harm patients or increase risks to patient safety.

Methods

Because a scoping search for adverse events in randomized controlled trials (RCTs) yielded few relevant results, we systematically searched nine databases, including MEDLINE, EMBASE, and The Cochrane Database of Systematic Reviews for systematic reviews and studies of a wide variety of designs that reported on implementation of the interventions. Studies that had safety and adverse events as outcomes, monitored for them, reported anecdotally adverse events or other events that might indicate a threat to patient safety were included.

Results

We found no systematic reviews that examined adverse events or patient harm caused by organizational interventions. Of the 4056 titles and abstracts screened, 176 full-text articles were assessed for inclusion. Sixty-one studies with appropriate interventions, settings and participants but without patient safety, adverse event outcomes or monitoring for risks were excluded, along with 77 other non-eligible studies. Eighteen randomized controlled trials (RCTs), 5 non-randomized controlled trials (non-R,CTs) and 15 observational studies were included. The most common electronic intervention studied was CDSS and the most frequent clinical area was cardio-vascular, including anti-coagulants. No RCTS or non-R,CTS reported adverse event. Adverse events reported in observational studies occurred less frequently after implementation of CDSS. One RCT and one observational study reported an increase in problematic prescriptions with electronic prescribing

Conclusions

The safety implications of electronic medication management in ambulatory care have not been established with results from studies included in this systematic review. Only a minority of studies that investigated these interventions included threats to patients’ safety as outcomes or monitored for adverse events. It is therefore not surprising that we found little evidence to substantiate fears of new risks to patient safety with their implementation. More research is needed to focus on the draw-backs and negative outcomes that implementation of these interventions might introduceagemebnt

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Wikipedia, Twitter, facebook, and YouTube: uses in health

Wikipedia, Twitter, facebook, and YouTube: uses in health | Social Media and Healthcare Evaluation | Scoop.it
Wikipedia, Twitter, facebook, and YouTube: uses in health

Via Andrew Spong
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ChemaCepeda's curator insight, July 31, 9:09 AM

¿Qué usos podemos dar a cada red social aplicados a la salud? Interesante gráfico con las ventajas y desventajas de cada una

rob halkes's curator insight, August 1, 3:35 AM

Great overview !

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The role of social media in online weight... [J Med Internet Res. 2013] - PubMed - NCBI

The role of social media in online weight... [J Med Internet Res. 2013] - PubMed - NCBI | Social Media and Healthcare Evaluation | Scoop.it
PubMed comprises more than 23 million citations for biomedical literature from MEDLINE, life science journals, and online books. Citations may include links to full-text content from PubMed Central and publisher web sites.
bacigalupe's insight:
BACKGROUND:

Social media applications are promising adjuncts to online weight management interventions through facilitating education, engagement, and peer support. However, the precise impact of social media on weight management is unclear.

OBJECTIVE:

The objective of this study was to systematically describe the use and impact of social media in online weight management interventions.

METHODS:

PubMed, PsycINFO, EMBASE, Web of Science, and Scopus were searched for English-language studies published through March 25, 2013. Additional studies were identified by searching bibliographies of electronically retrieved articles. Randomized controlled trials of online weight management interventions that included a social media component for individuals of all ages were selected. Studies were evaluated using 2 systematic scales to assess risk of bias and study quality.

RESULTS:

Of 517 citations identified, 20 studies met eligibility criteria. All study participants were adults. Because the included studies varied greatly in study design and reported outcomes, meta-analysis of interventions was not attempted. Although message boards and chat rooms were the most common social media component included, their effect on weight outcomes was not reported in most studies. Only one study measured the isolated effect of social media. It found greater engagement of participants, but no difference in weight-related outcomes. In all, 65% of studies were of high quality; 15% of studies were at low risk of bias.

CONCLUSIONS:

Despite the widespread use of social media, few studies have quantified the effect of social media in online weight management interventions; thus, its impact is still unknown. Although social media may play a role in retaining and engaging participants, studies that are designed to measure its effect are needed to understand whether and how social media may meaningfully improve weight management.

KEYWORDS:

Internet; obesity; overweight; social media; systematic review; weight loss

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The Behavioral Intervention Technology Model: An Integrated Conceptual and Technological Framework for eHealth and mHealth Interventions

The Behavioral Intervention Technology Model: An Integrated Conceptual and Technological Framework for eHealth and mHealth Interventions
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http://www.jmir.org/2014/6/e146/

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Electronic Word of Mouth on Twitter About Physical Activity in the United States: Exploratory Infodemiology Study

Electronic Word of Mouth on Twitter About Physical Activity in the United States: Exploratory Infodemiology Study | Social Media and Healthcare Evaluation | Scoop.it

Background: Twitter is a widely used social medium. However, its application in promoting health behaviors is understudied.
Objective: In order to provide insights into designing health marketing interventions to promote physical activity on Twitter, this exploratory infodemiology study applied both social cognitive theory and the path model of online word of mouth to examine the distribution of different electronic word of mouth (eWOM) characteristics among personal tweets about physical activity in the United States.


Via Marie Ennis-O'Connor
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Marie Ennis-O'Connor's curator insight, December 7, 2013 5:30 PM

This study recommends that future health marketing interventions promoting physical activity should segment Twitter users based on their number of followers, followings, and gaps between the number of followers and followings. The innovative application of both marketing and public health theory to examine tweets about physical activity could be extended to other infodemiology or infoveillance studies on other health behaviors (eg, vaccinations).

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Gaps in the gaze: Informatic practice and the work of public health surveillance | French | Surveillance & Society

Gaps in the gaze: Informatic practice and the work of public health surveillanceMartin French
Abstract
Many works that may be situated within the interdisciplinary field of Surveillance Studies have described dangerous potentialities associated with the pervasive, IT-mediated merger of once discrete data sets. In effect, these works cautioned about the rise of “big data” before it was named as such. Even so, they share an uncomfortable consonance with euphoric claims about the revolutionary transformation portended by big data. Situating both euphoric and critical accounts of the IT-mediated gaze within a larger informatic ethos — a spirit in the Weberian sense of this term, defined above all by its concealment of the labor that makes IT work — this article argues that discourse on the data-driven, information revolution must be supplemented by a more modest discourse empirically rooted in the everyday, pragmatic realities of IT. Where it departs from well-established social scientific analyses of IT, however, is in its development of a novel concept: informatic practice. Informatic practice may be defined as the sum of labor or activity that materializes information, including, for instance, such mundane activities as data entry. To empirically illustrate some complexities associated with informatic practice, this article discusses process challenges associated with the implementation of a large-scale (or “big”), regionally interconnected public health information system in Ontario, Canada. Informed by science and technology studies (STS) and actor-network theory (ANT), it uses documentary evidence and interviews with 38 key informants to describe informatic practice and to illustrate the mutations—the natural change—introduced into the IT-mediated gaze by everyday, material practices. This complicates both critical and euphoric claims about big data.Gaps in the gaze: Informatic practice and the work of public health surveillance
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List of Digital Health Solutions | Story of Digital Health

List of Digital Health Solutions | Story of Digital Health | Social Media and Healthcare Evaluation | Scoop.it
Digital health solutions range the gamut from consumer, medical, and clinical devices, apps, and related services leveraging them, to genetic and DNA testing to
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Enabling Community Through Social Media

Enabling Community Through Social Media
bacigalupe's insight:

Background: Social network analysis provides a perspective and method for inquiring into the structures that comprise online groups and communities. Traces from interaction via social media provide the opportunity for understanding how a community is formed and maintained online.
Objective: The paper aims to demonstrate how social network analysis provides a vocabulary and set of techniques for examining interaction patterns via social media. Using the case of the #hcsmca online discussion forum, this paper highlights what has been and can be gained by approaching online community from a social network perspective, as well as providing an inside look at the structure of the #hcsmca community.
Methods: Social network analysis was used to examine structures in a 1-month sample of Twitter messages with the hashtag #hcsmca (3871 tweets, 486 unique posters), which is the tag associated with the social media–supported group Health Care Social Media Canada. Network connections were considered present if the individual was mentioned, replied to, or had a post retweeted.
Results: Network analyses revealed patterns of interaction that characterized the community as comprising one component, with a set of core participants prominent in the network due to their connections with others. Analysis showed the social media health content providers were the most influential group based on in-degree centrality. However, there was no preferential attachment among people in the same professional group, indicating that the formation of connections among community members was not constrained by professional status.
Conclusions: Network analysis and visualizations provide techniques and a vocabulary for understanding online interaction, as well as insights that can help in understanding what, and who, comprises and sustains a network, and whether community emerges from a network of online interactions.


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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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