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Creating a Social Network for Adolescents with Cancer

Creating a Social Network for Adolescents with Cancer | Health Care Social Media And Digital Health | Scoop.it
Marie Ennis-O'Connor's insight:

Abstract Adolescents with cancer often feel isolated from family and friends. Their struggle with cancer is exacerbated by the marginalization that may occur. Online social networking might reduce the sense of isolation common to these children.

We began Bingu.org in 2011 as a social network for adolescent patients ages 13-21 at Mount Sinai Medical Center’s Hematology/Oncology outpatient clinic. MSMC, located in East Harlem, provides comprehensive services to patients throughout the New York metropolitan area. Bingu.org allows teens to blog, post photos, and discover other teenagers who understand what they’re going through.

Research has shown that adolescent patients may slip through the cracks of our healthcare system. This is evident in most pediatrics clinics, where cartoonish wallpaper, arts & crafts activities, and simple toys are meant to entertain younger patients. Today’s teenagers require interaction with peers, and for many of them this means online social networking.

Although many Bingu members have a Facebook account, such a diffuse and public community may not meet their needs. Bingu – an acronym for “But I’m Not Giving Up” – allows young patients with cancer or blood disorders to connect in a secure and candid environment. The content of the site is unavailable to search engines, and new members must be approved by the site administrator. This level of security is important to allow teens to share openly and to reassure parents.

From 9/2011-4/2012, Bingu has registered 28 members. Those recently diagnosed reach out to patients in remission and ask them what to expect. Teenagers receiving chemotherapy send each other messages of support and strength. Before joining the site, almost no teen knew of other patients with a similar condition. Now they each know over two dozen.

Although there are other, larger social networks for sick children, Bingu offers a more personal environment for those who share similar conditions in the same geographical area. The personal involvement of the moderator allows attention to the cultural and economic challenges of the community in which the site is based.

Our goal is that other hospitals across the country will create their own social networks for their communities, resulting in a regional strategy for patients with similar challenges. Such sites may be created with no professional training in computer science or web design. We used the social network service SocialGo, creating Bingu using their graphical user interface and without writing a single line of code.

The greatest challenge in creating Bingu and other similar sites may be in overcoming peoples’ fears of allowing teenagers to use the internet. Such projects may meet a skeptical and nervous response from hospital administrators. There may be concerns that giving teens the ability to connect online will inevitably lead to cyber-bullying, HIPAA violations, and inappropriate relationships. These concerns are real and must be addressed, but they should not deter us from the great benefit these online communities may provide to sick children.

Future plans include expanding support for adolescents with different medical conditions, branching out to other local hospitals, and obtaining resources to provide computers for adolescent cancer patients unable to purchase their own.

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Mercor's curator insight, March 6, 2013 11:04 AM

Rescooped by Lionel Reichardt / le Pharmageek from Health Care Social Media Monitor onto PHARMAGEEK & SOCIAL MEDIA

Health Care Social Media And Digital Health
Monitoring The Pulse Of Health Care Social Media And Digital Health
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Social Media for Healthcare Professionals

Social Media for Healthcare Professionals | Health Care Social Media And Digital Health | Scoop.it
Monitoring The Pulse Of Health Care Social Media
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10 More Compelling Reasons Healthcare Marketing Must “Think Mobile”

10 More Compelling Reasons Healthcare Marketing Must “Think Mobile” | Health Care Social Media And Digital Health | Scoop.it
Sharp reminders that if your healthcare marketing plans and strategy are not “thinking mobile,” your audience isn't going to get your message.
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Companies in Regulated Industries Can Also Do Digital Marketing

Companies in Regulated Industries Can Also Do Digital Marketing | Health Care Social Media And Digital Health | Scoop.it
Stop hiding behind your lawyers.
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Study: Doctors’ Texts Can Prod Patients To Take Drugs, But Questions Linger

Study: Doctors’ Texts Can Prod Patients To Take Drugs, But Questions Linger | Health Care Social Media And Digital Health | Scoop.it
In an analysis published Monday in JAMA Internal Medicine, researchers found that text message reminders help patients do better when it comes to taking their medicines. But questions about the specific ways to make the most of this strategy remain.
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Patient engagement in a digital environment

Patient engagement in a digital environment | Health Care Social Media And Digital Health | Scoop.it
In a shifting health care landscape, nontraditional players are trying to frame patient engagement strategies that are focused on providing patients solutions that are coordinated, convenient, customized, and accessible.

Via Olivier Delannoy
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Infographic: Cardiologists have their fingers on the pulse of social media

Infographic: Cardiologists have their fingers on the pulse of social media | Health Care Social Media And Digital Health | Scoop.it

If your health care facility specializes in cardiology, 2016 could be the year to step up your use of videos.

Cardiologists in the U.S. say they prefer:

Watching work-related videos on their desktop computers; just 26 percent do so on tablets.

Using digital technology to communicate with patients (62 percent).

Accessing pharmaceutical information via their smartphones (79 percent).

Which pharmaceutical company provides the best online services? According to this infographicfrom Digital Insights Group, cardiologists say AstraZeneca is No. 1, followed by Pfizer and Merck.

 


Via Plus91
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How to Create Amazing Social Posts for Your Healthcare Business

How to Create Amazing Social Posts for Your Healthcare Business | Health Care Social Media And Digital Health | Scoop.it
Use these ideas to create social media posts for your healthcare business’ social media profiles
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How healthcare systems can become digital-health leaders

How healthcare systems can become digital-health leaders | Health Care Social Media And Digital Health | Scoop.it
The potential of digitization is well understood, yet healthcare systems are struggling to convert ambition into reality. Here’s what we recommend. A McKinsey & Company article.
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Oncology dominates healthcare conversation on Twitter

Oncology dominates healthcare conversation on Twitter | Health Care Social Media And Digital Health | Scoop.it
This week at the 9th annual Digital Pharma East conference, Katie Collins (@KECollins28), healthcare strategist at Twitter, reported that cancer-related tweets are dominating healthcare conversation. In the past year, there were over 44 million tweets in reference to cancer. Heart disease was a distant second with 14.5 million tweets. Katie shared that this activity was …
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Utilizing social media data for pharmacovigilance: A review.

Utilizing social media data for pharmacovigilance: A review. | Health Care Social Media And Digital Health | Scoop.it
J Biomed Inform. 2015 Apr;54:202-12. doi: 10.1016/j.jbi.2015.02.004. Epub 2015 Feb 23. Research Support, N.I.H., Extramural; Review
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How the Pharma industry uses Social Media [Infographic]

How the Pharma industry uses Social Media [Infographic] | Health Care Social Media And Digital Health | Scoop.it
Research shows Pharma has been slow on the uptake, but massive opportunities await New communications technology has the potential to both disrupt and enha. Marketing topic(s):Social media marketing. Advice by Robert Allen.
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rob halkes's curator insight, January 27, 7:17 AM

Nice Infographic about the actual use of social media by pharma (click through to original post)

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Hospitals Need To Renew Their Digital Strategies To Reclaim Patient Engagement

Hospitals Need To Renew Their Digital Strategies To Reclaim Patient Engagement | Health Care Social Media And Digital Health | Scoop.it
Study shows that only 2 percent of patients are using mobile health apps at nation’s major hospitals. By Christine Kern, contributing writer
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Scripps Wired for Health study results show no clinical or economic benefit from digital health monitoring

Scripps Wired for Health study results show no clinical or economic benefit from digital health monitoring | Health Care Social Media And Digital Health | Scoop.it
The results are in for the Scripps Translational Science Institute’s Wired For Health study, and there’s no sugar-coating it: they’re disappointing for those working in digital health.
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Guide to Counteracting Resistance to Employee Online Access

Guide to Counteracting Resistance to Employee Online Access | Health Care Social Media And Digital Health | Scoop.it
Guide to Counteracting Resistance to Employee Online Access
Marie Ennis-O'Connor's insight:

Useful guide from the Mayo Clinic

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HIMMS16 and the Healthcare's Profession's Changing View of Social Media

HIMMS16 and the Healthcare's Profession's Changing View of Social Media | Health Care Social Media And Digital Health | Scoop.it
In my last blog on Linked Pulse `Improving Healthcare Provision – the Lessons of Social Media` I suggested that many of the characteristics of social media, and the fact that the general population have become very used to the technology and format, made it ideal for meeting some of the pressing challenges that health systems…
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Twitter Provides Patient Opinion Insight

Twitter Provides Patient Opinion Insight | Health Care Social Media And Digital Health | Scoop.it
Using patient communication on Twitter, providers may be able to collect data vital to improving engagement. By Katie Wike, contributing writer
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Characterizing the Discussion of Antibiotics in the Twittersphere: What is the Bigger Picture?

Characterizing the Discussion of Antibiotics in the Twittersphere: What is the Bigger Picture? | Health Care Social Media And Digital Health | Scoop.it
Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet
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The road to digital success in pharma

The road to digital success in pharma | Health Care Social Media And Digital Health | Scoop.it
Pharmaceutical companies can play a central role in the digital revolution of healthcare. But capturing this opportunity requires identifying the right initiatives. A McKinsey & Company article.
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Utilizing Social Media to Build Brand Awareness in Healthcare

Utilizing Social Media to Build Brand Awareness in Healthcare | Health Care Social Media And Digital Health | Scoop.it
Looking to Build more brand awareness to your Healthcare practice? Learn how Social media can be a great outlet to have a conversation with consumers and build
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How Social Media Is Shaking Up Public Health and Healthcare

How Social Media Is Shaking Up Public Health and Healthcare | Health Care Social Media And Digital Health | Scoop.it
From clinical healthcare to public health campaigns, the health industry is increasingly turning to social media to support, promote and increase the spread of information and data in order to impr...
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Twitter Can Predict Rates of Coronary Heart Disease, According to Penn Research

Twitter Can Predict Rates of Coronary Heart Disease, According to Penn Research | Health Care Social Media And Digital Health | Scoop.it
Twitter has broken news stories, launched and ended careers, started social movements and toppled go
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GP practices should not be scared of using Facebook

GP practices should not be scared of using Facebook | Health Care Social Media And Digital Health | Scoop.it
Social media can play an important role in promoting patient-centred care and improving practice's relationships with patients, writes Dr Ruth Chambers.
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Designing With The Patient in Mind

Designing With The Patient in Mind | Health Care Social Media And Digital Health | Scoop.it
Marie Ennis-O'Conner explains how the potential of digital technology will never be realized if unless the stakeholders work alongside patients in co-designing

Via Patient Empowerment Network
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Tweet from @Nephro_Sparks

Tweet from @Nephro_Sparks | Health Care Social Media And Digital Health | Scoop.it

I shared a few tips for success using #SoMe in #MedEd #NephForward pic.twitter.com/2jcBoruLL6

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5 healthcare marketing trends to watch in 2016

5 healthcare marketing trends to watch in 2016 | Health Care Social Media And Digital Health | Scoop.it
The top marketing trends that healthcare organizations of all sizes and budgets can—and should—be on top of in 2016.
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10 disruptive technologies that will transform pharma

10 disruptive technologies that will transform pharma | Health Care Social Media And Digital Health | Scoop.it
10 disruptive technologies that will transform pharma - Articles Bertalan Mesko highlights some of the key trends that are set to change our approach to health and wellbeing – and the way pharma does business. It's fascinating to witness how disruptive in
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