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Post by sportsrancho on Jun 11, 2017 17:06:23 GMT -5
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Post by sportsrancho on Jun 11, 2017 17:08:11 GMT -5
A Perfect Twitter Storm: Why Is the ADA So Anti–Social Media?
Liz Neporent June 11, 2017 SAN DIEGO — Meeting attendees are pushing back against the enforcement of severe restrictions on social media posts that discuss the American Diabetes Association (ADA) 2017 Scientific Sessions taking place here this week. Since the meeting began on Friday, June 9, many of the attendees' Twitter posts, including photographs from sessions, have been met by a polite yet firm appeal from the ADA asking them to delete their tweet. "Thanks for joining us at #2017ADA! Photography isn't allowed during presentations — we'd appreciate it if you would delete this tweet," reads a typical Twitter response from the ADA's official handle, @amdiabetesassn. Twitter users immediately began expressing anger and frustration over the seemingly draconian attempts to limit social media conversations at the association's scientific sessions. Many say they see it as an unethical attempt to maintain a monopoly on data and educational effort. "Those in power are counting on you to NOT speak up & to comply. Stop deleting, Start tweeting, Don't be thanked for ur compliance," C Michael Gibson, MD, an interventional cardiologist at Beth Israel Deaconess Medical Center, Boston, Massachusetts, tweeted several times to his more than 300,000 Twitter followers. One prompted a long string of replies in agreement, as well as 150 likes and 90 retweets. Similar posts are also receiving brisk engagement. At times, the flood of negative reaction has dominated conversations about the conference on Twitter. The phrases "Freethetweet," "ludditeofthemonth," and "freedomoftweech" were just as often associated with the conference's official hashtag, #2017ADA, as phrases like "insulin," "mortality," and "changingdiabetes," according to the Twitter analytics site, keyhole.co. "The refusal of the American Diabetes Association to allow sharing of publicly presented content is out of step with the policy of other medical societies that have embraced social media to the benefit of both patients and healthcare providers alike," Dr Gibson told Medscape Medical News. "In the interest of speeding the transformation of diabetic care, patients and healthcare providers should call upon the ADA to reverse its policy to restrict the sharing of photos and slides from the meeting," he added. Tweeting From a Meeting "Not Considered Prior Publication," Says NEJM
Even those not in attendance but still following the meeting on Twitter chimed in. Dr Kevin Campbell, a cardiologist and medical expert who makes frequent media appearances, posted more than a dozen tweets to his 137,000 followers, admonishing the ADA. In his view, the restrictions are an archaic form of censorship that only serves to stifle discussion and creativity. "All societies go out of their way to promote interaction and sharing on social," Dr Campbell told Medscape Medical News. "If we do not share data and information, we will only make slow advancements. Real-time interaction provided by SoMe [social media] allows us to make real progress much faster." Another highly prolific physician tweeter who blogs for theheart.org on Medscape, Dr John Mandrola, agrees. He said he finds the policy nonsense and largely unenforceable, a viewpoint he tweeted out several times to his nearly 20,000 followers.
Sample of tweets at ADA [click here for a larger image] "This is the beginning of the end of the 'closed' or 'hierarchical' model of medicine," he told Medscape Medical News, adding that influential publications such as the New England Journal of Medicine (NEJM) encourage tweeting from medical conventions. In fact, NEJM guidelines state: "Online posting of an audio or video recording of an oral presentation at a medical meeting, with selected slides from the presentation, is not considered prior publication." More than a dozen people tweeted out a screen shot of the journal's policy. ADA Says "It's a Copyright Issue"
But the ADA said it views the tweets as a copyright issue. "The association understands and appreciates the desire to publicly share photos of research slides and posters presented at Scientific Sessions, especially considering today's technology and the prevalence of instant communication via social media. "However, all research slides and posters are the legal property of each of the research authors and their study team, not the association," said Linda Cann, the association's senior vice president of professional services and education, in a written statement provided to Medscape Medical News. "Many presentations include unpublished data, and while researchers are eager to share it with their peers through their presentation at Scientific Sessions, they maintain legal ownership of their research work (intellectual property)." Ms Cann further asserted that the association is legally obligated to protect the legal rights of the study authors who submit their work for presentation. When registering, all attendees agree to the meeting policies and to follow all local and federal laws, including those related to the intellectual property rights of all parties, she pointed out. Reversing the policy could unwittingly dismantle the long-standing discourse and engagement of medical and scientific research meetings around the world and lead to a restriction of published medical research, she said. The majority of the feedback on Twitter does not agree with the ADA's point of view, however. And at times, the controversy has spilled out into the conference itself. While some presenters told participants it was fine to tweet about their poster or session, others said they couldn't. Many attendees took pictures and tweeted out their thoughts regardless. A growing number have defiantly ignored deletion requests. And some users expressed frustration that all the noise surrounding this was interfering with the legitimate purpose of most people trying to use social media at the meeting. For example, @renzas tweeted: "Impossible to follow the #2017ADA feed with all the discussion about photo ban." The association will be reevaluating the policy after the meeting is over, Ms Cann said. However, it seems too late to stem the digital ire surrounding this year's event. An official slide of the top 10 Twitter influencers at the conference, created by the ADA, was dominated by its most vocal critics, including Gibson and Campbell. And one tweeter, MZ Khalil, who was clearly miffed at the restrictions, summed it up by posting a picture of a large, empty conference room.
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Post by mnholdem on Jun 11, 2017 17:50:10 GMT -5
A Perfect Twitter Storm: Why Is the ADA So Anti–Social Media? Liz Neporent June 11, 2017 SAN DIEGO — [1st section clipped] ADA Says "It's a Copyright Issue" But the ADA said it views the tweets as a copyright issue. "The association understands and appreciates the desire to publicly share photos of research slides and posters presented at Scientific Sessions, especially considering today's technology and the prevalence of instant communication via social media. "However, all research slides and posters are the legal property of each of the research authors and their study team, not the association," said Linda Cann, the association's senior vice president of professional services and education, in a written statement provided to Medscape Medical News. "Many presentations include unpublished data, and while researchers are eager to share it with their peers through their presentation at Scientific Sessions, they maintain legal ownership of their research work (intellectual property)." Ms Cann further asserted that the association is legally obligated to protect the legal rights of the study authors who submit their work for presentation. When registering, all attendees agree to the meeting policies and to follow all local and federal laws, including those related to the intellectual property rights of all parties, she pointed out. This statement by Linda Cann rings as a half-truth, because the ADA forbids even the research authors themselves from publishing their copyrighted material prior to the presentation at the ADA Scientific Sessions. The ADA policy discloses this during registration. Blocking pre-publication of authors' research slides and posters, in my opinion, may be less about protecting the authors than it is about getting more people to register to attend.
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Post by peppy on Jun 11, 2017 18:02:09 GMT -5
hmmmm. I remember when we had to take down the RLS stuff because, "this board might be in danger of breaking some law about copyright." oh ha ha ha ha ha ha ha .
comply or die.
and you all know I have a copy of it. so do plenty of others on the board.
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Post by sportsrancho on Jun 11, 2017 18:07:21 GMT -5
hmmmm. I remember when we had to take down the RLS stuff because, "this board might be in danger of breaking some law about copyright." oh ha ha ha ha ha ha ha .
comply or die.
and you all know I have a copy of it. so do plenty of others on the board. I have a copy of everything;-)
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Post by mnholdem on Jun 11, 2017 18:17:11 GMT -5
You might think it's funny, but Administrator and the staff of ProBoards answer to the company that runs all ProBoards forums for hundreds of stocks. I cannot disclose the details other than to generalize but, at the time, due to a threat of lawsuit by a party whose articles were being re-printed on ProBoard-MNKD, staff was faced with the choice of compliance or having the ProBoards-MNKD forum shut down. Still think it's funny? The difference between our policy and the ADA's is ProBoards members were publishing material whose authors notified us of copyright infringement, while the ADA doesn't allow publication even if the authors want and would give permission to have their research disseminated as widely as possible. That is a big difference, peppy.
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Post by peppy on Jun 11, 2017 18:23:41 GMT -5
You might think it's funny, but Administrator and the staff of ProBoards answer to the company the runs all ProBoards forums for hundreds of stocks. I cannot disclose the details other than to generalize but, at the time, due to a threat of lawsuit by a party whose articles were being re-printed on ProBoard-MNKD, staff was faced with the choice of compliance or having the ProBoards-MNKD forum shut down. Still think it's funny? The difference between our policy and the ADA's is ProBoards members were publishing material whose authors notified us of copyright infringement, while the ADA doesn't allow publication even if the authors want and would give permission to have their research disseminated as widely as possible. That is a big difference, peppy. I do not want this board shut down. additionally, I do not have a legal degree.
Law and order.
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Post by sayhey24 on Jun 11, 2017 18:26:06 GMT -5
Maybe its time to start a new association with the interest of the PWD in mind instead of their own and BP. The American Association for Diabetics seems to be available.
I wonder what happened at the 2pm session on CGMs and T2s. Nothing seems to be on Twitter.
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Post by mnholdem on Jun 11, 2017 18:46:54 GMT -5
I think the ADA provides a valuable service, but their focus is on physicians more than patients. What is problematic, for me anyway, is that the ADA Diabetes Standards of Care are determined by a group of physicians, many of whom (as has been previously disclosed on ProBoards in a different thread) are allegedly sponsored by large pharmaceutical companies to conduct research. Conducting and publishing drug research is a vital need, but it also leads to a concern of conflict of interest. Would a group of physicians support a treatment knowing full well that to put it 1st in the Standards would likely result in $billion of lost revenue for their sponsors?
This, IMO, it what is brilliant about the OneDrop strategy of bypassing the status quo and putting more decision-making power into the hands of the patient. Whether this strategy can be used by MannKind remains to be seen, but it would mark the beginning of what Dachis called a "revolution" in the diabetes treatment industry.
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Post by kc on Jun 11, 2017 21:17:27 GMT -5
Social media is in and the status quo just doesn't get it yet. Big Pharma is like old media newspapers and TV news reporting.
Glad that Mike C. And the board understand the new realities of social media in 2017. Let the old guard continue to wonder about the new normal and Paradim shift taking place.
The old stodgy ADA can't control social media.
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Post by peppy on Jun 11, 2017 21:43:36 GMT -5
I think the ADA provides a valuable service, but their focus is on physicians more than patients. What is problematic, for me anyway, is that the ADA Diabetes Standards of Care are determined by a group of physicians, many of whom (as has been previously disclosed on ProBoards in a different thread) are allegedly sponsored by large pharmaceutical companies to conduct research. Conducting and publishing drug research is a vital need, but it also leads to a concern of conflict of interest. Would a group of physicians support a treatment knowing full well that to put it 1st in the Standards would likely result in $billion of lost revenue for their sponsors? This, IMO, it what is brilliant about the OneDrop strategy of bypassing the status quo and putting more decision-making power into the hands of the patient. Whether this strategy can be used by MannKind remains to be seen, but it would mark the beginning of what Dachis called a "revolution" in the diabetes treatment industry. The good news the way I see it is meal time insulin IS on the standards of care. I hope with whatever label change afrezza may receive, the change helps physicians use afrezza for type one and the insulin option for type 2. The protocols as shown. As sayhey said, he did not want metformin. Me, I would let the physician write for metformin, I just would not fill it or take it if I did not want it. we do get to choose. Nodding and then doing whatever I want works for me.
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Post by sayhey24 on Jun 12, 2017 5:02:17 GMT -5
I think the ADA provides a valuable service, but their focus is on physicians more than patients. What is problematic, for me anyway, is that the ADA Diabetes Standards of Care are determined by a group of physicians, many of whom (as has been previously disclosed on ProBoards in a different thread) are allegedly sponsored by large pharmaceutical companies to conduct research. Conducting and publishing drug research is a vital need, but it also leads to a concern of conflict of interest. Would a group of physicians support a treatment knowing full well that to put it 1st in the Standards would likely result in $billion of lost revenue for their sponsors? This, IMO, it what is brilliant about the OneDrop strategy of bypassing the status quo and putting more decision-making power into the hands of the patient. Whether this strategy can be used by MannKind remains to be seen, but it would mark the beginning of what Dachis called a "revolution" in the diabetes treatment industry. The good news the way I see it is meal time insulin IS on the standards of care. I hope with whatever label change afrezza may receive, the change helps physicians use afrezza for type one and the insulin option for type 2. The protocols as shown. As sayhey said, he did not want metformin. Me, I would let the physician write for metformin, I just would not fill it or take it if I did not want it. we do get to choose. Nodding and then doing whatever I want works for me.
If the ADA really wanted to address T2 diabetes they would replace this entire chart with what Dr Bruce Bode said; Step 1 - diet exercise and monitor first Step 2 - afrezza It sure makes the charts a lot easier but it also destroys all product sales for BP and all the "research" the ADA is supporting. This chart in the era of afrezza is a disgrace. Any news on yesterday's 2pm ADA session on CGMs and T2's?
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Post by peppy on Jun 12, 2017 6:04:56 GMT -5
sayhey, the ada seems to be an extension of big pharma in the recesses of my mind. It seems to be a system for prescription drug distribution rather than an institution for the benefit of patients.
I was never like this prior to afrezza. I have come to believe my eyes have been opened as to our system of pressure and corruption. ad nauseam, case in point, a system were physicians can not use their eyeballs. They have to pretend they are blind and can not see. Per the continuous glucose monitor evidence.
Although, people that know, say, continuous glucose monitor use of interstitial fluids for blood glucose values can be delayed values and imprecise.
From 10 dollars to 66 (13.2) cents, my thinking has gotten so bent, my thinking became, I(we) have been lied to all our lives. Then I read the FDA approval papers and trials on multiple drugs and conditions. Perhaps I have become a terrible human being.
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Post by mnholdem on Jun 12, 2017 7:12:07 GMT -5
Although Afrezza may qualify as the most potentially disruptive innovation for the treatment of diabetes to come along in 20 years, I suspect that there have been many other innovative drug treatments that have faced the same resistance and, perhaps, have disappeared from the market. Afrezza, itself, seemed to be destined to be rejected by the FDA until the near-unanimous affirmative vote at ADCOM made that virtually impossible.
I think that it's entirely possible that many drug companies have been force to fold, in spite of great drugs, due to an antiquated and unyielding medical system that seems to stifle innovation and place roadblocks before any drug that threatens big pharma and/or the status quo. The exceptions are those small pharmaceutical development companies that were acquired by the larger global pharmas where, in those cases, innovative drugs have become blockbusters and/or have secured a spot in the ADA Diabetes Standard of Care, which virtually guarantees that they'll be prescribed.
Only later, after numerous deaths and tragic health consequences are made public, do we begin to realize how badly the medical system is flawed.
The other exceptions are those companies who are backed by a billionaire or entrepreneur who is willing to inject vast amounts of money into the company in order to get an innovative and life-changing new drug to market.
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Post by agedhippie on Jun 12, 2017 9:40:14 GMT -5
Although Afrezza may qualify as the most potentially disruptive innovation for the treatment of diabetes to come along in 20 years, I suspect that there have been many other innovative drug treatments that have faced the same resistance and, perhaps, have disappeared from the market. My favorite candidate for that is the BCG vaccine as Type 1 cure. There is some evidence that the BCG vaccine resets the immune system and even a phase 1 trial but funding the phase 2 trial has been a struggle. Hopefully that will change since they just presented their interim Phase 2 results at the ADA. This is the link to the Phase 2 trial and to an article in the Boston Business Journal. Needless to say this treatment is wildly unpopular with all the pharma sector (and probably the JDRF) since it costs almost nothing and cures all the Type 1 diabetics who are a huge profit center for them.
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