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#SocPharm Tweetchat Transcript 5/11/2011

Posted by | 10:39pm on Wednesday, May 11, 2011

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First off, thanks to @ for making the weekly #socpharm tweet chats so compelling. Critical topic for healthcare to address.

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@ thank you for moderating #socpharm while I’m enjoying a birthday dinner ;)

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Hello, Stephany here, advocate,mother,caregiver,blogger pharma critic who loves transparency, accountability #socpharm

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@ Happy Birthday !!! #socpharm

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For starters let’s do introductions. I’m Jeff, and I lead digital strategy for HealthEd, a patient education company. #socpharm

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Thank you!RT @: @ Happy Birthday !!! #socpharm

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@ Happy birthday! #socpharm

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Simon SIkorski, MD – concerned about #pharma advertising & how it affects healthcare information on the interned #socpharm

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Hi Simon and Stephany, welcome. #socpharm

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Happy Birthday @ #socpharm will place lit candles on racing armadillo’s in your honor tonight – got fire Marshall OK ;)

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Stan welcome. #socpharm

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@ Happy birthday fellow Taurus! #socpharm

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What would bloggers do if this was their blog? didnt sign up. trademark? http://organizedwisdom.com/Soulful-Sepulcher/wt/med #socpharm

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Well, let’s get started – T1: I understand people have a lot of opinions about practices at OrganizedWisdom. What’s the story? #socpharm

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#socpharm Christine Curtis project manager and medical assistant active in pharma advertising and social media

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?:unorganizedwisdom is using unauthorized/unverified health related content while running pharma ads 4 profit – consumer Backlash? #socpharm

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Considering many of us run in the ePatient group and #socpharm group, PR, etc & some blog I think the #organizedwisdom topic is a good one

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Hi, @, digital strategist. Happy to join #socpharm and send HBD wishes to @. Hope it’s been a great day for you!

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Organizedwisdom just fails to listen to concerns. http://bit.ly/cLIwgs #socpharm | Long-standing concerns. Same ones.

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#socpharm story is for me wanting to choose to have my blog highlighted like theyve done to my blog links. they use trademark by my blog

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” Soulful Sepulcher WisdomCard™” I object to that #socpharm it’s my blog name and labeled as if i condone or want that card-never signed up.

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Hi Joyce and Christine welcome aboard. #socpharm The topic at hand is OrganizedWisdom – some are saying its model is unethical (and more)

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I was told that I dont have a #organizedwisdom profile so i cant remove THIS http://organizedwisdom.com/Soulful-Sepulcher/wt/med #socpharm

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Shire would NOT like Vyvanse ad next to quacky health info #socpharm #pharma || http://twitpic.com/4wfkrk

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Hi everyone: I’m Stan – a professional rabblerouser, #rxsave hijacker, patient/consumer advocate, & world renowned SM philosopher #socpharm

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Irony would be if paid sponsors (Shire)read my links at #organizedwisdom they would see anti-pharma blogs& DOJ fines articles! :) #socpharm

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Print it out, certified mail it to them = removal RT @: I was told that I dont #organizedwisdom #socpharm #organizedwisdom

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Devil’s advocate: What about sites like Topix which aggregate content from across the Web? Different from OrganizedWisdom? #socpharm

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And people seeking health information should not be overwhelmed all the time with irrelevant pharma ads #socpharm #pharma

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@ #socpharm UGH why should I have to print out,mail? this OW seems unethical if they dont happily remove requested feeds

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Has OW changed it’s approach? Are the current happenings new? #socpharm

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@ Good question, OW misuses the information shared by 5700 health care experts. It’s a whole lot different #socpharm

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@ #socpharm there are a lot of aggregates but OW is appearing to want to advertise selves as Wellsphere type of “go-to” health

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Hi Andrew welcome to #socpharm – good point about certified mail.

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RT @: @ Good question, OW misuses the information shared by 5700 health care experts. It’s a whole lot different #socpharm

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Thanks Jeff #socpharm

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#socpharm I had signed up for wellsphere and once they had pharma funding I cancelled acct. #organizedwisdom should be same way CHOICE

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OW forgets it’s not data they aggrege, but healthcare info. As such it must be presented as is, not misappropriated for $ – #socpharm

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#socpharm i also truly feel OW doing such a mass linking of so many #health sites it is reckless recommendations of not always credible info

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T1 I’m a Nursing Curator, submit helpful links, OW sell drug ads on wisdom cards, implying my endorsement. Cheats sites in SEO. #socpharm

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#socpharm please continue the convo – your moderator will be back in 5 after a piggyback and bed-tuck-in for the 7 year old :)

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RT @: Shire would NOT like Vyvanse ad next to quacky health info #socpharm #pharma || http://twitpic.com/4wfkrk

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#socpharm i personally would *never* want to be considered as they have me there as a “wisdom card”. Bad idea to glean so many sites IMHO

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RT @: Organizedwisdom just fails to listen to concerns. http://bit.ly/cLIwgs #socpharm | Long-standing concerns. Same ones.

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There is not a Editorial or Screening process evident to protect consumers. RT @: ?:unorganizedwisdom is using #socpharm

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Coming up, T2: PLM. WEGO. Inspire. Daily Strength. Care Pages. ACOR. Which community is best – 4 patients? 4 pharma? #socpharm

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Registered Nurse, would not trust OW as a resource. RT @: Considering many of us run in the ePatient group and #socpharm

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OW’s problem: they add more health info each day onto a faulty platform with severe shortcoming – disaster waiting to happen #socpharm

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They keep offering to “fix” an exploitative, broken business model. RT @: Organizedwisdom just fails to listen to #socpharm

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This would be a good time to start the armadillo races – and THIER OFF..FharmaGuy is waddling Past BigHead by a length…WOW #socpharm

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http://organizedwisdom.com/Soulful-Sepulcher/wt/med #socpharm remember I never offered any of that info on that link at #organizedwisdom

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They as a matter of course, plagiarize site content http://4nursing.blogspot.com/2011/05/organized-wisdom-why-is-my-site-name.html #socpharm

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T2 @ Good question. There are many good communities. 4 patients I think @ provides a great service #socpharm

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They make a “wisdom card” for each link, “borrow” the business name, and meta tag description, then submit to search engines #socpharm

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RT @: Registered Nurse, would not trust OW as a resource. RT @: Considering many of us run in the ePatient group and #socpharm

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Automated process, not using “curators” reputations to sell ads. RT @: Devils advocate: What about sites like Topix wh #socpharm

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RT @ Nursing Curator,submit helpful links,OW sell drug ads on wisdom cards,implying my endorse Cheats sites in SEO #socpharm

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These sites tend to be disease specific – when pharmaceutical sponsorship/influence occurs there is definitely an issue COI #socpharm

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T2 @ has really evolved, serving patients with research and treatment info that some say is invaluable. #socpharm

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Ads are ubiquitous on the web, can’t avoid them RT @: And people seeking health information shou #socpharm #pharma #socpharm

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Pharma ads are a poor choice for OW. RT @: And people seeking health information should not be #socpharm #pharma #socpharm

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#socpharm the doctors listed at #organizedwisdom also are wild cards “psychiatrists” many have diff views/status

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T2 These sites tend to be disease specific – when pharmaceutical sponsorship/influence occurs there is definitely an issue of COI #socpharm

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Still has pharma ads, still exploiting curators, still cheating at SEO. RT @: Has OW changed its approach? Are the current #socpharm

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#socpharm Dr Daniel Carlat wrote negative blog about Dr Amen Clinic re mental health brain scan diagnosing both listed #organizedwisdom

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Have had two discussions with them so far, core issues are not being acknowledged. RT @: Has OW changed its approach? Are #socpharm

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Well, when pharma gets involved in amazing dreams… everyone seems to always wake up quick. #socpharm

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#socpharm @ look at this page abt my blog w/out permission http://organizedwisdom.com/Soulful-Sepulcher/wt/med

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Curators are the “Face” of OW, it exploits them to sell drug ads, then hurts submitted sites. RT @: @ #socpharm

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Update: Flaming Armadillo OBrien just burned past BigHead and FarmaGuy waddling into the home stretch..Go Birthday Armadillo Go #socpharm

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I have to say from personal exp @ does it right. No ads, and value to pharma is research not marketing #socpharm

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@ @ are only 2 people – There are thousands more affected by OW… and not know about it. #socpharm

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#socpharm http://organizedwisdom.com/Soulful-Sepulcher/wt/med take a look at my blog links they are all abt Pharma COI, Nemeroff, scandal!

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RT @: I have to say from personal exp @ does it right. No ads & value to pharma is research not marketing #socpharm

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#socpharm so OW takes a feed like mine and promotes anti-pharma and ghostwriting of Journals, DOJ fines, etc seems ironic!

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@ you have to remember that pharma sites are regulated pretty hard so no COI occurs $ some are very helpful to pts.#socpharm

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Again, is there a screening process to protect from Quacks? RT @: #socpharm the doctors listed at #organizedwisdom #socpharm

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Ok new topic – given our audience tonite. T3: Patient advocates + HC professionals: How *should* pharma use social media? #socpharm

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I never knew about #organizedwisdom until last week when #socpharm had @ as guest moderator and he brought it up

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@ But – for what purpose that info will ultimately be used… questionable #socpharm

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How *should* pharma use social media? #socpharm || to listen & foster conversations between patients & HC providers

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Holy Armadillo! it’s a photo finish..put bikini tops back on and pay attention to the judges..and the Winner Is? Tune in next week #socpharm

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RT @: How *should* pharma use social media? #socpharm || to listen & foster conversations between patients & HC providers

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How about pharma advertising, drug sales? Rife with abuse. RT @: @ you have to remember that pharma sites #socpharm

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For pharma – patients & hc providers are stakeholders | For OrganizedWisdom – hc experts – In both cases, engaging them is key #socpharm

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T3: Can pharma be trusted to use social media? TV, Journal Ads? RT @: Ok new topic – given our audience tonite. #socpharm

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@ #socpharm i am a patient advocate, for my daughter. How should pharma use SM? not as free DTC

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@ judging from the track records of pharma funded so called advocate groups like NAMI, DBSA – don’t see very much good! #socpharm

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@ @ I agree.DTC advertising is not always responsible. It has to be backed with more ed. not sales #socpharm

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They have a poor ethical track record with consumers, physicians. RT @: Ok new topic – given our audience tonite. #socpharm

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I see so much spam each day it hurts the eyes #socpharm || social media is meant to be social – not spam

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#socpharm how should pharma use SM? they already use it for data tracking of product names Seroquel for example & v-fluence data scrapers

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@ agree w/ you, especially for #raredisease patients who r desperate for info/treatments/support. #socpharm

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t3: SM is another invitation to abuse, mislead, exploit for big pharma. RT @: Ok new topic – given our audience tonite #socpharm

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@ What positive examples of patient/HC conversations have you seen? #socpharm

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#socpharm obvious canned answer for how should pharma use SM is to “build patient/consumer trust and listen” that’s getting old

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@ Unfortunately, they can not all be winners.. but it does not mean there are not great sites out there #socpharm

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#socpharm positive examples of patient convos/ @ and @ knock it out of the park! Regina’s artwork astouding

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@ I’m still trying to tell docs to get a freakin website :) forget social media yet :)) #socpharm

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T3 – not sure they can use SM effectively until they R willing 2B Transparent, honest, and come clean abt behaviors w/ consumers #socpharm

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@ What about ‘little’ pharma? Eg, PKU.com brought together a community not possible w/o pharma investment. #socpharm

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Understand, ive 2 educate 2 RT @: @ I’m still trying 2 tell docs 2 get a freakin website :) forget SM yet :)) #socpharm

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T3: Whistleblowing, catching health care fraud: http://www.ama-assn.org/amednews/2011/02/28/bisb0228.htm #socpharm

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@ But blogs & videos are extremely effective in bridging the gap btw pt & hc #socpharm || @ is extraordinary in that

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Yes! Agreed @: #socpharm Pos. examples of patient convos/ @ @ knock it out of the park! #socpharm

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@ This isn’t a game off winners and losers..this is about vital health information..misinformation & COI do kill #socpharm

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RT @: Yes! Agreed @: #socpharm Pos. examples of patient convos/ @ @… (cont) http://deck.ly/~yXEgr

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http://pharmagossip.blogspot.com/2010/11/pharma-not-well-equipped-to-handle-pr.html #socpharm pharma in social media via @

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t3: SM has been used effectively to collect anectdotal information from patients in clinical trials. RT @: #socpharm

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So true!! RT @: I see so much spam each day it hurts the eyes #socpharm || social media is meant to be social – not spam

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Can’t believe the hour is up already! Feel free to keep #socpharm convo going. Glad to see advocates, HCPs, & pharma talking together.

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Great 2 Know! @: blogs & videos are effective in bridging the gap btw pt & hc #socpharm || @

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RT So true!! RT @: I see so much spam each day it hurts the eyes #socpharm || social media is meant to be social – not spam

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T3 promoting an unnecessary treatment or drug can have same horrible consequences as denying a needed medication/treatment #socpharm

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@ thanks for moderating! great discussion!! lots of info covered #socpharm

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@ And that’s why HCP’s should be vital in the process of developing and contributing. #socpharm

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RT @: T3 promoting an unnecessary treatment or drug can have same horrible consequences as denying a needed medication/treatment #socpharm

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Thanks for hosting Jeff and to all for the chat. #socpharm Glad to see advocates, HCPs, & pharma talking together.

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And Dat’s all Folks …until we meet again at the races…good night #socpharm

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RT @ promoting an unnecessary treatment or drug can have same horrible consequences as denying a needed med/treatment #socpharm

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@ Thanks Jeff!!#socpharm

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#socpharm one more thought: all aspects of health, meds, pharma, PR,advocates,etc should listen to EACH OTHER,know all facets=empowerment

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Wanted to share with you @ @ howardluksmd.com A great physician blog! #socpharm

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Indeed! RT @: Wanted to share with you @ @ howardluksmd.com A great physician blog! #socpharm

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Thx @ @ @ @ @ and all participants. And happy birthday @! #socpharm

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RT @: RT @ promoting an unnecessary treatment or drug can have same horrible consequences as denying a needed med/treatment #socpharm

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btw thx to @ http://bit.ly/lBVQNL for adding me as well as @ Most Influential health tweets #hcmktg #socpharm #pharma

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@ big thanks to you for moderating #socpharm tonight. I’ll post transcript tomorrow.

About Eileen O'Brien

Eileen has more than 16 years of digital healthcare marketing experience. She is an opinion leader on social media and biopharma, and has been invited to speak at industry conferences and quoted in publications.

View other posts from Eileen

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