Presentation given by Rob Camp as part of a patient capacity building workshop entitled "Learn about Rare Disease patient networking via online patient communities & Searching for quality disease and medical information on the internet." which took place in Krakow, Poland on May 13 2010 as a satellite workshop to the 5th European Conference on Rare Diseases.
Rob’s background includes serving as Executive Director of the EATG (European AIDS Treatment Group), the creation of an HIV organisation in Barcelona, the creation of national groups in Spain and other countries (organising seminars on how to create organisations in EU Eastern States, Southern States), leading projects supported by the European Commission department for Public Health (DG SANCO), working on funding for NGOs. Rob is currently working half time in the US as liaison between patient organisations and the FDA, and spends the rest of his time in Europe. Rob speaks English and Spanish.
Conference 5 - “Patient’s Experience in the Development and Implementation of...
FDA Social Media Hearing Part 15 Summary
1. Reg’ authorities and social media “ There’s something happening here. And what it is ain’t exactly clear”, Buffalo Springfield, the great social media philosopher
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Notes de l'éditeur
Although the agency believes that many issues can be addressed through existing FDA regulations, special characteristics of Web 2.0 and other emerging technologies may require the agency to provide additional guidance to the industry on how the regulations should be applied.
Part 15 – FDA asks questions of the general public and listens to the answers, and asks questions if they want. They will then use this plus any other testimony sent in to try to form public policy if not law.
John Kamp (4As and the Coalition for Healthcare Communication) pointed out that the Michele Sharp (Eli Lilly) pointed out that Tony Blank (Boston Scientific and AdvaMed)
RohitBhargava (Ogilvy 360 Digital Influence) offered a way to determine Jeff Francer (PhRMA) called for , FDA panelists got nervous, as they feared the agency logo would be co-opted and construed as an implied endorsement. John Mack (Pharma Marketing News) shared that , (obvious, but must be said),
ArnieFreide argued that the Diana Zuckerman (National Research Center for Women & Families) commented that Robert Winder (VuMedia) made the point that (or non-clear authorship) Wayne Gattinella (WebMD) discussed how Tiffany Mura (Consensus Interactive) called for Craig Audet (sanofi-aventis) shared that the
Mark Gaydos (s-ab, representing the Social Media Working Group - AZ, s-a, BMS, Millennium, Amgen). David Zinman (Yahoo!) commented that the (for example, I now have a Yahoo page that allows boxes to open up and expand on subjects related to where I am on the page
Philomena McArthur and Liz Forminard (J&J) discussed Mark Bard (Manhattan Research), twice as many docs as pts! Stan Valencis (Acsys Interactive) pointed out that , Does your hospital have social media? John Mangano (comScore) shared that
FardJohnmar (Envision Solutions) said, Lawrence Mickelberg (Euro RSCG 4D) said W. John Reeves (McCann Healthcare Worldwide) pointed out that Mary Anne Belliveau and Amy Cowan (Google) presented a
Peter J. Pitts (Porter Novelli) said that , If regulated industry wants the FDA to be both regulator and colleague, then it’s not a leap of faith to imagine that the FDA would like industry to be proactive in its search for new ways to surface adverse events. , “In compliance” and “in the best interest of the public health” must not be mutually exclusive propositions.
Tony Blank (Boston Scientific, AdvaMed) said that Kim Witczak (Private citizen) called for the Steve Findlay (Consumer’s Union) said that
Chris Schroeder (HealthCentral) shared JefFFrancer (PhRMA) commented that RohitBhargava (Ogilvy 360 Digital Influence) made the point that
Rick Wion (GolinHarris) shared that James Allen Heywood (PatientsLikeMe) asked, Diana Zuckerman (National Research Center for Women & Families) made the point that John Mack (Pharma Marketing News) shared research showing that only Paul Roellig (Bulletin News) suggested that
Daniel Palestrant (Sermo) observed that Donna Wray (TGaS Advisors) Jonathan Richman (Dose of Digital) commented that Fabio Gratton (Ignite Health) shared data showing that Robert Grammatica (Rapp) asked,
Jim Walker (Cadient Group) talked about Wendy Blackburn (Intouch Solutions) shared research demonstrating that Freda Lewis-Hall and Cliff Thumma (Pfizer) presented
(not a redefinition of what an adverse event is)
A big thanks to Peter J. Pitts (Porter Novelli) of DrugWonks.com, http://www.drugwonks.com/blog_post/blogger?date=2009-11&blog= He also has a list of related blogs that is out of this world.