International groups of patients are linking up 24/7 through social media to disseminate knowledge, provide peer support, and offer clinical advice. And all of this is delivered quickly, at the touch of a button.
Is social media saving lives? Or is it spreading poor information and damaging private confidentiality? The rapid rise of patient support groups on social media is putting some fundamental ethical questions into the spotlight.
Information and drugs at our fingertips, The BMJ 354:i4527, 18 August 2016.
From celebrity and news magazines to TV programs to Facebook pages and mommy blogs, family-building successes are routinely and glowingly shared and celebrated. But where are the voices of those who are unable to have children? In relating what happens when nature and science find their limits, the award-winning memoirSilent Sorority examines a seldom acknowledged outcome and raises provocative, often uncomfortable questions usually reserved for late night reflection or anonymous blogging. Outside of the physical reckoning there lies the challenge of moving forward in a society that doesn’t know how to handle the awkwardness of infertility.
With no Emily Post-like guidelines for supporting couples who can’t conceive, most well-intentioned “fertile” people miss the mark. Silent Sorority provides an unflinching and insightful look at adjusting to a new path, and offers a steady voice rarely heard in the noisy era of designer babies and helicopter parents.
EAv is where you are rewarded for being social online
Expand, engage, evaluate your Social Networks
Empire Avenue is the fastest and most effective way to expand, engage and evaluate your social networks
Use Empire Avenue’s powerful missions to drive traffic and engagement to your online content and social profiles, and to gain relevant new fans, followers and subscribers on Facebook, YouTube, Twitter, Instagram, Google+ and other networks
Use the built-in Network Scores and other metrics to gauge the effectiveness and progress of your social media efforts
Join now (e)DESdaughter 6,000+ shareholders on Empire Avenue and start investing today! it’s FUN & FREE!
Thanks Paul for this article and for opening the discussion on the use of Empire Avenue to raise awareness about an issue. Measuring the success of our awareness campaign and social media strategy is a great challenge for us as it is for many non-profits and corporate organizations. First you have to determine what success means to you based on your goals and mission. For us Empire Avenue is just one element of our social media strategy. It definitely helps us achieve one of our campaign goals which is to reach out to people who have never heard of DES. But our reach goes far beyond the EAv community. Not only our content is increasingly shared and liked outside the DES community, it generates media attention. In January 2012, the Independent, one of the largest UK national newspaper with an average daily circulation at 83,600 +, contacted us for an interview. The story made the front page cover of their Sunday edition and the interview was picked up by many other national newspapers such as the Daily Mail online and offline. DES very rarely receives mainstream media attention so this was a massive success for us and all the forgotten DES victims in the UK. This interview had a snowball effect. Since then, we’ve given three interviews and provided quotes and a foreword to a novel soon to be published in the UK. As a team of two we may never achieve policy changes and increase funding for the DES cause. However, we can make sure DES is not forgotten and remains in the public eye at least until all generations affected by this drug are gone! Our strategy is to connect, contribute, collaborate, and ultimately impact society. We believe the collective voice of DES victims and those who are engaging on the DES issues on social media channels can bring about change. In order for people to care, they need to know. In order for governments to take action, they need to be pressured by the general public. So our mission is to gain support for the DES cause from the general public. We are taking on this challenge one step at a time!
Join now (e)DESdaughter 3,850+ shareholders on Empire Avenue and start investing today! it’s FUN & FREE!
… And that is where Empire Avenue, a social media platform, came in… … They found that missions could increase transactions, tweets, re-tweets, likes, and comments etc., across social platforms which in turn could help them achieve better ranking in keyword and search results and across other platforms. Furthermore, the mission exercise could not only help their cause, but also help them learn more and be better at social media… Read Social media “missions” extend reach for social causes by G. Gazin ; The Gadget Guy at Troy Media.
In the U.S. an estimated 5 to 10 million persons were exposed to Diethylstilbestrol; 740,000 in Australia, 300,000 in the UK, 160,000 in France and many more as DES was also prescribed in other countries such as the Netherlands, Ireland, South America, … If we did not have to consider many other factors such as age groups, location, etc., we could almost say that 1% of Facebook users have been exposed to DES… In today’s world of fast-paced communication, it does struck me that whilst so many people have been exposed yet very few people know about the DES drug tragedy. The good news is Facebook is changing this!
By offering a unique forum where DES daughters, sons, mothers and their family can connect and share their story, Facebook offers the opportunity to reach out to a wide audience of people thus spreading awareness of the damage this prescription drug and many others prescription drugs such as Thalidomide, Mediator, etc. have caused.
“I am so grateful to have found your Facebook page. I am a DES Daughter, diagnosed with CCA at the age of 17. I am celebrating my 42nd year of surviving this terrible cancer. (…) I pray each day for all those that have been affected or have to deal with issues that this travesty has caused. Thank you for providing a forum for education and support” – commented a DES daughter on my Facebook profile recently.
I’m glad more and more DES Action groups are using this platform to raise awareness about DES and help break the wall of silence around the DES health issues.
DES News via Facebook
Please find a list of Facebook groups and pages providing updates about the Diethylstilbestrol related issues as well as support for DES victims.
Technorati (with name coming from “Technology” and “Literati” – technological literature intelligence) is an Internet search engine for searching blogs and/or posts by tag or keyword. In addition to this, each of Technorati channels have a variety of feature columns that cover specific niches of the blogosphere and news.