Comments on: Three Things I Learned at the FDA Social Media Hearings and Three I Wish I Had http://www.doseofdigital.com/2009/11/three-things-i-learned-at-the-fda-social-media-hearings-and-three-i-wish-i-had/ Improving Healthcare Through Digital Technology -- Effectively using digital technology and social media in pharma and healthcare Sat, 31 Jul 2010 19:02:15 +0000 hourly 1 http://wordpress.org/?v=3.0 By: Jonathan Richman http://www.doseofdigital.com/2009/11/three-things-i-learned-at-the-fda-social-media-hearings-and-three-i-wish-i-had/#comment-3245 Jonathan Richman Sun, 22 Nov 2009 01:53:10 +0000 http://www.doseofdigital.com/?p=1743#comment-3245 Thanks, Ed. Be sure to check out my post called "166 Adverse Events Equals One Red Herring" to get a feel for how many reportable events a day the pharma industry might face using a few bits of data: http://www.doseofdigital.com/2009/11/166-reportable-adverse-events-equals-one-read-herring/ Thanks, Ed. Be sure to check out my post called “166 Adverse Events Equals One Red Herring” to get a feel for how many reportable events a day the pharma industry might face using a few bits of data: http://www.doseofdigital.com/2009/11/166-reportable-adverse-events-equals-one-read-herring/

]]> By: Why Pharma Needs Social Media | PRforPharma http://www.doseofdigital.com/2009/11/three-things-i-learned-at-the-fda-social-media-hearings-and-three-i-wish-i-had/#comment-3230 Why Pharma Needs Social Media | PRforPharma Fri, 20 Nov 2009 18:06:47 +0000 http://www.doseofdigital.com/?p=1743#comment-3230 [...] We even formed a united front and marched to capital hill to tell the FDA why it should issue guidance on how pharma companies are permitted to engage in social media. [...] [...] We even formed a united front and marched to capital hill to tell the FDA why it should issue guidance on how pharma companies are permitted to engage in social media. [...]

]]> By: Ed Purkis http://www.doseofdigital.com/2009/11/three-things-i-learned-at-the-fda-social-media-hearings-and-three-i-wish-i-had/#comment-3224 Ed Purkis Fri, 20 Nov 2009 14:40:39 +0000 http://www.doseofdigital.com/?p=1743#comment-3224 More learnings for us in the UK – thanks for sharing the slides Jon. Particularly interested to see only 1 in 500 posts qualifies as a ‘reportable adverse event’. Legally, it’s always going to be a barrier to pharma communicating online in the UK, although this kind of thing definitely helps to calm the nerves of our (understandably) cautious pharma colleagues and feel more comfortable about other forms of online engagement. Look forward to seeing how things develop. Keep us updated – the blog is great! Ed www.blog.virgohealth.com .-= Ed Purkis´s last blog ..<a href="http://blog.virgohealth.com/2009/11/pharma-online-are-we-wanted/" rel="nofollow">Pharma online: Are we wanted?</a> =-. More learnings for us in the UK – thanks for sharing the slides Jon. Particularly interested to see only 1 in 500 posts qualifies as a ‘reportable adverse event’. Legally, it’s always going to be a barrier to pharma communicating online in the UK, although this kind of thing definitely helps to calm the nerves of our (understandably) cautious pharma colleagues and feel more comfortable about other forms of online engagement.

Look forward to seeing how things develop. Keep us updated – the blog is great!

Ed

http://www.blog.virgohealth.com
.-= Ed Purkis´s last blog ..Pharma online: Are we wanted? =-.

]]> By: Lisa Emrich http://www.doseofdigital.com/2009/11/three-things-i-learned-at-the-fda-social-media-hearings-and-three-i-wish-i-had/#comment-3195 Lisa Emrich Wed, 18 Nov 2009 23:24:35 +0000 http://www.doseofdigital.com/?p=1743#comment-3195 I agree that it could be must more user-friendly. Most folks aren't going to go through the amount of pages I did just to see what information (in total) was included on the pages. It should be rewritten and redesigned to appeal to a wide range of individuals. There is definitely much room for improvement. In the meantime, though, we should do what we can to talk about the benefits of reporting serious adverse events (and confusing labeling, etc) for the betterment of health in general and not expect that pharma companies or our doctors are the only ones capable and expected to speak up. .-= Lisa Emrich´s last blog ..<a href="http://feedproxy.google.com/~r/BrassAndIvory/~3/aALSH61QbdA/patients-for-moment-at-chronicbabe.html" rel="nofollow">Patients for a Moment at ChronicBabe</a> =-. I agree that it could be must more user-friendly. Most folks aren’t going to go through the amount of pages I did just to see what information (in total) was included on the pages. It should be rewritten and redesigned to appeal to a wide range of individuals. There is definitely much room for improvement.

In the meantime, though, we should do what we can to talk about the benefits of reporting serious adverse events (and confusing labeling, etc) for the betterment of health in general and not expect that pharma companies or our doctors are the only ones capable and expected to speak up.
.-= Lisa Emrich´s last blog ..Patients for a Moment at ChronicBabe =-.

]]> By: Jonathan Richman http://www.doseofdigital.com/2009/11/three-things-i-learned-at-the-fda-social-media-hearings-and-three-i-wish-i-had/#comment-3193 Jonathan Richman Wed, 18 Nov 2009 21:32:04 +0000 http://www.doseofdigital.com/?p=1743#comment-3193 Thanks, Lisa. Perhaps "MedWatch is dead" was a bit of an overstatement (a bit of poetic license I suppose), however, I do believe that in its current format it isn't valuable to consumers nor is it likely to entice them to actually submit adverse events. It needs some fundamental changes to ensure that patients feel like they get some value out of going through the trouble to fill out a form or call someone on the phone. Either way, it's 15-30 minutes out of their lives and for what? What's in it for them? Until FDA can answer this question, it will never be as effective as it could be in collecting adverse events. So, perhaps "MedWatch is dead" was an overstatement, but I wish the current format WAS dead and replaced with something that consumers are far more likely to use, which in the end, will benefit everyone. Thanks, Lisa.

Perhaps “MedWatch is dead” was a bit of an overstatement (a bit of poetic license I suppose), however, I do believe that in its current format it isn’t valuable to consumers nor is it likely to entice them to actually submit adverse events. It needs some fundamental changes to ensure that patients feel like they get some value out of going through the trouble to fill out a form or call someone on the phone. Either way, it’s 15-30 minutes out of their lives and for what? What’s in it for them? Until FDA can answer this question, it will never be as effective as it could be in collecting adverse events. So, perhaps “MedWatch is dead” was an overstatement, but I wish the current format WAS dead and replaced with something that consumers are far more likely to use, which in the end, will benefit everyone.

]]> By: Lisa Emrich http://www.doseofdigital.com/2009/11/three-things-i-learned-at-the-fda-social-media-hearings-and-three-i-wish-i-had/#comment-3189 Lisa Emrich Wed, 18 Nov 2009 20:24:54 +0000 http://www.doseofdigital.com/?p=1743#comment-3189 Jonathan, I'm not so sure I agree that MedWatch is dead. It certainly isn't well-advertised nor well-known, but it does offer a good service to the consumer. After listening to the FDA hearings, I took a long tour of the MedWatch pages. I summarized what seem to be the most relevant bits of information for my fellow patient readers http://bit.ly/35TVnH . It's true that the information is not streamlined and I did found variations of the same theme on different pages. However, it was fairly consistent throughout. I suspect that folks who discussed MedWatch during the hearings saw this page http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm which says that there are TWO ways to report adverse events to the FDA. However, look at the sidebar on the left. There is a link to the online submission form found on this page https://www.accessdata.fda.gov/scripts/medwatch/medwatch-online.htm . I located a link to the same page within a separate piece of pharma communication using this url - https://www.accessdata.fda.gov/scripts/medwatch/ . The online option has apparently been available for some time. But again, that is not commonly known. And FDA even offers a widget which can be placed on websites and blogs, see http://www.fda.gov/Safety/MedWatch/ucm128254.htm (page last updated 6/19/2009). So perhaps you can help me spread the word link to my post at HealthCentral which provides information which should be understandable to the average patient. http://www.healthcentral.com/multiple-sclerosis/c/19065/95209/adverse Thanks, @LisaEmrich BTW, I have enjoyed following the discussion surrounding pharma/social media. .-= Lisa Emrich´s last blog ..<a href="http://feedproxy.google.com/~r/BrassAndIvory/~3/aALSH61QbdA/patients-for-moment-at-chronicbabe.html" rel="nofollow">Patients for a Moment at ChronicBabe</a> =-. Jonathan, I’m not so sure I agree that MedWatch is dead. It certainly isn’t well-advertised nor well-known, but it does offer a good service to the consumer. After listening to the FDA hearings, I took a long tour of the MedWatch pages.

I summarized what seem to be the most relevant bits of information for my fellow patient readers http://bit.ly/35TVnH . It’s true that the information is not streamlined and I did found variations of the same theme on different pages. However, it was fairly consistent throughout.

I suspect that folks who discussed MedWatch during the hearings saw this page http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm which says that there are TWO ways to report adverse events to the FDA.

However, look at the sidebar on the left. There is a link to the online submission form found on this page https://www.accessdata.fda.gov/scripts/medwatch/medwatch-online.htm . I located a link to the same page within a separate piece of pharma communication using this url – https://www.accessdata.fda.gov/scripts/medwatch/ .

The online option has apparently been available for some time. But again, that is not commonly known. And FDA even offers a widget which can be placed on websites and blogs, see http://www.fda.gov/Safety/MedWatch/ucm128254.htm (page last updated 6/19/2009).

So perhaps you can help me spread the word link to my post at HealthCentral which provides information which should be understandable to the average patient. http://www.healthcentral.com/multiple-sclerosis/c/19065/95209/adverse

Thanks,
@LisaEmrich

BTW, I have enjoyed following the discussion surrounding pharma/social media.
.-= Lisa Emrich´s last blog ..Patients for a Moment at ChronicBabe =-.

]]> By: nalts http://www.doseofdigital.com/2009/11/three-things-i-learned-at-the-fda-social-media-hearings-and-three-i-wish-i-had/#comment-3172 nalts Wed, 18 Nov 2009 11:08:09 +0000 http://www.doseofdigital.com/?p=1743#comment-3172 I'm so glad you're at the top of my RSS... this sent me into a 2-hour self-serve education session. I suppose what I'm most excited about is the prospects of that space city for the next hearing. I intend to fly my space car to the next hearings with the brains of John Mack and Bruce Grant in a jar in my trunk. .-= nalts´s last blog ..<a href="http://feedproxy.google.com/~r/willvideoforfood/NJWH/~3/8mfjcjo8mcU/" rel="nofollow">Brightcove for $99 per Month. What’s This Mean to a Crowded Platform Space?</a> =-. I’m so glad you’re at the top of my RSS… this sent me into a 2-hour self-serve education session. I suppose what I’m most excited about is the prospects of that space city for the next hearing. I intend to fly my space car to the next hearings with the brains of John Mack and Bruce Grant in a jar in my trunk.
.-= nalts´s last blog ..Brightcove for $99 per Month. What’s This Mean to a Crowded Platform Space? =-.

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