Tag Archives: government

#WHDemoDay and #ADAinitiative — Oh, the Irony


Welcome to Demo Day at the White House! (Megan Smith, the First US Chief Technology Officer) https://www.youtube.com/watch?v=PxGrDsuwCFk

“It’s a tradition in the tech community to show off amazing things that people have built. … All Americans do this. All American are capable of this. And it’s a big part of our future, and it’s always been a big part of our past.”

Yesterday was a landmark day in diversity and inclusion.

Yesterday saw the first ever White House Demo Day (#WHDemoDay), for women and minority entrepreneurs and innovators to ‘pitch’ their ideas to President Obama.

Yesterday saw the end of the ADA Initiative, “a feminist organization. We strive to serve the interests and needs of women in open technology and culture who are at the intersection of multiple forms of oppression, including disabled women, women of color, LBTQ women, and women from around the world.” (Ada Initiative, About Us)

How enormously ironic to see the closing of the one with the opening of the other, and both with such closely related missions. I can only hope that this first White House Demo Day proves to be one of many, and that the effort continues to embrace and support diversity as essential to American creativity and innovation.

White House Demo Day

The White House Demo Day had demonstrations to illustrate the diversity of people contributing to the innovation that helps strengthen the American economy. Most of the companies presenting had at least one woman founder or co-founder. Almost as many of the companies presenting had a founder that is a person of color or who shows ethnic or cultural diversity. The two companies represented by white men were (1) military, and (2) a winner of the XPRIZE. There were a few wonderful presenters from Michigan, including Ann-Marie Sastry of the University of Michigan Ann Arbor talking about her innovations in batteries and power storage. Products presented included new search engines based on cognitive models, medical innovations in cancer / HIV / aging / asthma, parenting tools, strategies for empowering patients, creative ways to repay student loans, several on converting ‘waste’ to profit, and much more. There was even Zoobean, who partner with libraries to recommend books and apps based on children’s preferences.

White House Demo Day

Part of what made this so wonderful (and why I wish I’d heard about it sooner) was the move to encourage parallel events across the country. I wish we’d done this here! Here are some tweets about the high points.

Read about the presenters here. Listen to the pitches here.


President Obama Hosts the First-Ever White House Demo Day https://www.youtube.com/watch?v=aKsxHS5vptM

White House Demo Day: https://www.whitehouse.gov/demo-day

Ada Initiative

“When the Ada Initiative was founded in 2011, the environment for women in open technology and culture was extremely hostile. Conference anti-harassment policies were rare outside of certain areas in fandom, and viewed as extremist attempts to muzzle free speech. Pornography in slides was a regular feature at many conferences in these areas, as were physical and sexual assault. Most open tech/culture communities didn’t have an understanding of basic feminist concepts like consent, tone policing, and intersectional oppression.” https://adainitiative.org/2015/08/announcing-the-shutdown-of-the-ada-initiative/

The Ada Initiative began by trying to change the world for women in STEM and tech. They stopped, but not without having made change, and not without leaving a permanent legacy. You’ll see tributes and comments below to testify to this, but you’ll also see links to some of the content they made open source and Creative Commons in order to help perpetuate their work, as well as work from some of their partners who carry on the good message and work. By the way, their open source toolkits are absolutely incredible and well worth downloading.

HOWTO design a code of conduct for your community https://adainitiative.org/2014/02/howto-design-a-code-of-conduct-for-your-community/
Code of conduct evaluations http://geekfeminism.wikia.com/wiki/Code_of_conduct_evaluations

Announcing the ADA Camp Toolkit: https://adainitiative.org/2015/07/add-a-little-bit-of-adacamp-to-your-event-announcing-the-adacamp-toolkit/

ADACamp Toolkit: https://adacamp.org/
– Inclusive event catering: https://adacamp.org/adacamp-toolkit/inclusive-event-catering/
– Providing conference childcare: https://adacamp.org/adacamp-toolkit/childcare/
– Quiet room: https://adacamp.org/adacamp-toolkit/quiet-room/
– Supporting d/Deaf and hard of hearing people at an unconference: https://adacamp.org/adacamp-toolkit/supporting-deaf-people/

DARPA: Biology IS Technology, Biology is INFORMATION Technology #DARPAbit

150225-N-CJ559-024

This is possibly the coolest (or scariest) thing I’ve seen since I become an Emerging Technologies Librarian. I wanted to blog about it a WEEK ago (which is when I made the Storify, over the weekend because I was so geeked I couldn’t wait). The reason I didn’t blog it then was because our library is moving into our renovated digs TODAY and packing took precedence. Somehow that delay just makes this even more delicious. You MUST see this!

DARPA (Defense Advanced Research Projects Agency) is the branch of the United States government most directly and publicly associated with emerging technologies. You better bet that I pay attention to what they’re doing. I try to peek at the DARPA budget, go every so often and poke around on their site, and keep my antennae tuned for mentions of DARPA in the news. They are in the news basically all the time, so I can’t pay TOO much attention, and since in recent years they have been largely focused on robotics (a.k.a. the famous DARPA Robotics Challenge) and engineering, and I am focused on healthcare emerging tech, maybe I haven’t visited as often as I might if it was just for fun. That has changed, because DARPA is now officially into the idea of biology as technology. Check out their recent conferences on this topic: Biology is Technology!

“DARPA’s Biological Technologies Office (BTO) is bringing together leading-edge technologists, start-ups, industry, and academic researchers to look at how advances in engineering and information sciences can be used to drive biology for technological advantage.”

Oh, my, yes. Now, THIS is right on target for what I want to know about in my job. And I bet there are all kinds of grants coming around and possible partnerships that our faculty will want to explore. Here are just a few of the bits the news media picked up from these conferences: targeted antibody development and THoR (Technologies for Host Resilience); brain-computer interfaces; cortical modems & optogenetics; engineered biology and GMOs more broadly; exoskeletons; memory technologies; open data and open source; prosthetics; terraforming Mars with GMOs (and there was a LOT on this!).

Craig Venter on headless humans and predicting your exact face from your DNA

There are some topics that interested me that the news hasn’t seemed to talk about yet, at least not prominently. Aging and immortality. Biocomplexity and Crohn’s disease. Cancer. Innovative research methodologies. Microbiomics. Transplantation and organ farming. Future of scholarship. Oh, and there is SO much more. It was livestreamed, but I couldn’t free up the time to watch it, so I am trying to work through the videos now. Here, join me.

DARPAtv: Biology Is Technology (San Francisco, February 2015) https://www.youtube.com/playlist?list=PL6wMum5UsYvZnisi5VjUUjhpXoIMTSCwx

Arati Prabhakar – Director, DARPA
Fireside Chat: Sue Siegel CEO GE Ventures
Geoff Ling – Director, BTO: Fomenting Technological Revolution
Phillip Alvelda – Program Manager: Beyond Prosthetics
Dan Wattendorf – Program Manager: Outpacing Infectious Disease
Jack Newman, Amyris
Alicia Jackson – Deputy Director, BTO: Programming the Living World
Fireside Chat: George Church interviewed by George Dyson
Justin Sanchez – Program Manager: Brain-Machine Symbiosis
Matt Hepburn – Program Manager: It’s the Host not the Pathogen
Stephen Friend – Sage Bionetworks
Barry Pallotta- Program Manager: A Wild Ride
Doug Weber – Program Manager: Enabling the Body to Heal Itself
Justin Gallivan – Program Manager: Embracing Biological Complexity
Keynote Craig Venter – Founder and CEO, HLI, JCVI and SGI
Keynote Saul Griffith – Otherlab
Karl Deisseroth, Stanford University
Will Old, University of Colorado at Boulder
Michel Maharbiz, University of California, Berkeley
Eddie Chang, University of California, San Francisco
Adam Abate, University of California, Berkeley
Scott Ulrey: Doing Business With DARPA

DARPAtv: Biology is Technology (New York City) https://www.youtube.com/playlist?list=PL6wMum5UsYva5aoxvLejhB9eirt0TVD-K

Alicia Jackson – Deputy Director, BTO: Programming the Living World
Welcome to DARPA BiT from Dr. Steve Walker, Deputy Director of DARPA
Dr. Geoff Ling: Fomenting Technological Revolution, DARPA BiT
Martine Rothblatt: Keynote at DARPA BiT
Dr. Phillip Alvelda: The Future of Neural Interface, DARPA BiT
Dr. Alicia Jackson: Programming the Living World, DARPA BiT
Jack Newman: Keynote at DARPA BiT
Zach Serber: Keynote at DARPA BiT
Dr. Elizabeth Strychalski: Biocomplexity, DARPA BiT
COL Matt Hepburn: It’s the Host Not the Pathogen, DARPA BiT
Dr. Doug Weber: Neurobiology as Technology, DARPA BiT
Kevin Tracey: Keynote at DARPA BiT
Dr. Justin Sanchez: Brain-Machine Symbiosis, DARPA BiT
MAJ Chris Orlowski: Optimizing Human Performance, DARPA BiT
COL Dan Wattendorf: Rapid Health Protection for the Population, DARPA BiT
Dr. Harvey Lodish: Keynote at DARPA BiT
Dr. Justin Gallivan: Building with Biology, DARPA BiT
Dr. Barry Pallotta: A Wild Ride, DARPA BiT
Dr. Geoff Ling: Day 1 Closing Remarks, DARPA BiT
Dr. Geoff Ling: DARPA BiT Day Two Introduction
Dr. Stephen Friend: Sage Bionetworks – DARPA BiT Keynote Speaker
Dr. Paul Cohen: DARPA Program Manager, DARPA BiT Keynote Speaker
Dr. Joel Dudley: Mount Sinai School of Medicine – DARPA BiT Keynote Speaker
Dr. Peter Sorger: Harvard Medical School – DARPA BiT Keynote Speaker
John Sculley: Former CEO of Apple and Pepsi-Cola – DARPA BiT Keynote Speaker
Scott Ulrey: DARPA Contract Management Office – DARPA BiT
Dr. Geoff Ling: Day 2 Conclusion – DARPA BiT

So much good stuff! I just had to make a Storify to integrate the videos with the pics and tweets.

And I made a big playlist with all of the videos so far, from all the sessions (partly because I started making this playlist before I found theirs, and because I want all of it in one place, easy for me to find).

Patricia Anderson: Playlist: DARPAbit: https://www.youtube.com/playlist?list=PLEEZFNZ4nUEDTdj_dxxYLz9z7kSZH-oP1


REFERENCES (Chronological order)

2015/02

Robbin A. Miranda, William D. Casebeer, Amy M. Hein, Jack W. Judy, Eric P. Krotkov, Tracy L. Laabs, Justin E. Manzo, Kent G. Pankratz, Gill A. Pratt, Justin C. Sanchez, Douglas J. Weber, Tracey L. Wheeler, Geoffrey S.F. Lin. DARPA-funded Efforts in the Development of Novel Brain–Computer Interface Technologies. H+ Magazine February 9, 2015. http://hplusmagazine.com/2015/02/09/darpa-funded-efforts-development-novel-brain-computer-interface-technologies/

Peter Rothman. Video Friday: DARPA Prosthetics Research. H+ Magazine February 13, 2015. http://hplusmagazine.com/2015/02/13/video-friday-darpa-prosthetics-research/

Peter Rothman. Biology is Technology — DARPA is Back in the Game With A Big Vision and It Is H+. H+ Magazine February 15, 2015. http://hplusmagazine.com/2015/02/15/biology-technology-darpa-back-game-big-vision-h/

Max Plenke. These Are the 7 Ways the Government Wants to Change the Human Body for the Future. Tech.Mic June 26, 2015. http://mic.com/articles/121341/darpa-biotech-7-ways-the-government-wants-to-change-the-human-body-for-the-future

2015/04

Peter Rothman. Restoring Active Memory Replay — DARPA Seeks Super Learning and Enhanced Memory Technologies. H+ Magazine April 28, 2015. http://hplusmagazine.com/2015/04/28/restoring-active-memory-replay-darpa-seeks-super-learning-and-enhanced-memory-technologies/

Maxx Chatsko. Can DARPA Change Your Mind on Engineered Biology? The Motley Fool interviews DARPA’s Dr. Alicia Jackson from the Biological Technologies Office. The Motley Fool April 30, 2015. http://www.fool.com/investing/general/2015/04/30/can-darpa-change-your-mind-on-engineered-biology.aspx

2015/06

Sara Reardon. The Pentagon’s gamble on brain implants, bionic limbs and combat exoskeletons. Nature News June 10, 2015. http://www.nature.com/news/the-pentagon-s-gamble-on-brain-implants-bionic-limbs-and-combat-exoskeletons-1.17726

Lily Hay Newman. Researchers Sharing Data Was Supposed to Change Science Forever. Did It? Slate: Future Tense June 24, 2015. http://www.slate.com/blogs/future_tense/2015/06/24/darpa_s_biology_is_technology_conference_discusses_problems_with_open_source.html

Brian Wang. DARPA wants to engineer from millions of organisms and not just yeast and ecoli. Next Big Future June 25, 2015. http://nextbigfuture.com/2015/06/darpa-wants-to-engineer-from-millions.html

Carl Engelking. DARPA Is Supposedly Engineering Organisms to Make Mars Livable. Discover Magazine June 26, 2015. http://blogs.discovermagazine.com/d-brief/2015/06/26/darpa-is-engineering-organisms-to-make-mars-livable/

Carl Tanaka. DARPA Genetically Engineering Organisms for Terraforming Mars into Livable Planet. ReliaWire June 27, 2015. http://reliawire.com/2015/06/darpa-genetically-engineering-organisms-for-terraforming-mars-into-livable-planet/

DARPA to terraform Mars with human-engineered organisms. Business Standard June 28, 2015. http://www.business-standard.com/article/pti-stories/darpa-to-terraform-mars-with-human-engineered-organisms-115062800459_1.html

HOLD THE PRESSES!!! Wave the Flag! Susannah’s Coming!

Pic of the day - Flag in Dawn's Early Light

I could not have been more delighted when late yesterday I saw a post on Gilles Frydman’s Facebook stream to the effect that Susannah Fox is the new CTO of HHS (meaning: Chief Technical Officer of the United States Department of Health and Human Services). Gilles was sharing Susannah’s post on the HHS Idea Lab Blog (worth following, if you don’t already).

Susannah Fox: I’m the New CTO of HHS: http://www.hhs.gov/idealab/2015/05/28/im-new-cto-hhs/

Executive.gov: Susannah Fox Named HHS CTO: http://www.executivegov.com/2015/05/susannah-fox-named-hhs-cto-sylvia-mathews-burwell-comments/

FedScoop: “Susannah Fox, an expert on the intersection of technology and medicine, takes over for former Chief Technology Officer Bryan Sivak.” http://fedscoop.com/hhs-names-next-cto

In that post Susannah talks about her work with the Pew Research Foundation, Robert Wood Johnson Foundation, and much more. She talked about how very much she was enjoying being exactly who she is and where she was. And then, something magical happened, something magical for all of us: the HHS recruited her, went after her, and convinced her to take the CTO job. This is magical because Susannah is not just intelligent, expert, influential, and well connected. Susannah has heart. She is kind to strangers. [See Regina’s post on Susuannah’s Walking Gallery jacket: “That was my idea of Susannah Fox. I did not know her name. I did not know her job. I only knew that she was kind and was a good mother.“]

Susannah is gracious, polite, honest, and real. Susannah has family and friends, people she cares about with real day-to-day health struggles. Susannah is a person, a REAL person. She is fiercely, heart-wrenchingly protective of her kids. She thinks her hair looks funny, and she fusses to get it just so. I think she’s gorgeous, of course, and she rolled her eyes and laughed when I said her hair was lovely. She has hobbies and interests beyond the job. She has a passion for helping others, because she really CARES, and for helping others in the right way, with information and evidence and data and tools. She doesn’t help just the anonymous strangers because it looks good. She doesn’t just help the people she loves because she loves them. She is kind and helpful everywhere she goes, because that’s who she is. But she does it smart. She knows limits, and she knows that limits can be stretched when we collaborate. She knows tough choices. She knows the problems of the world can’t be forced into coming out the way we wish they would.

Susannah and I have talked over social media, email, various ways for years, and I was lucky enough to meet her in person last fall.

See? That’s me, all the way down at the end of the line. Alicia Staley is in front, Susannah is next, and Pat Mastors right before me. It was great fun, and they were all so kind. I, and so MANY others are excited, because we see hope for real, meaningful, significant change in American healthcare policy and leadership. Here are a few selected comments from public Facebook and Twitter about this (with many MANY more that weren’t public, so I didn’t share them here).

Gilles Frydman: “Today is simply a really great day for real, meaningful patient empowerment!”

Me: “Huzzah! Hurray! Whoohoo! Susannah Fox is the new head honcho of all things tech at HHS! WHOOOOO!”

e-Patient Dave DeBronkart: “This wins my prize as the biggest government-based Mazel Tov in the history of the e-patient movement! Bringing heart and soul to health IT??? From someone who knows how people ACTUALLY use the internet?? How great is this??”

Tim O’Reilly: “Awesome news from @SusannahFox http://1.usa.gov/1J5RsQt She is the new CTO of HHS. Big win for all of us!!”

Hugh Campos: “Today is a great day for the ‪#‎epatient‬ movement: Susannah Fox has announced that she’s accepted the job of CTO of HHS. Absolutely thrilling news!”

Brian Ahier: “I am so pleased that +Susannah Fox is now the CTO at HHS! Not only is she the first woman to hold this post, but she is one of the strongest advocates on behalf of patients, an incredible thought leader in the realm of health data (a true health data geek :-), but she is a genuinely wonderful person who will bring a whole new viewpoint to this role.”

Nedra Weinreich: ” A perfect role for a woman who combines tech savvy with human compassion. Congrats, Susannah!”

Meredith Gould: “SuperMongoHuge Congrats to @SusannahFox on becoming new CTO of HHS http://1.usa.gov/1eBjN4p Brava!”

Kathleen Comali Dillon: “Great news for us all- Susannah Fox is a pioneer in healthcare and waaaaay ahead of the curve.”

Casey Quinlan: “Susannah Fox is now Head Geek at HHS. I’m ‘sploding with joy”

Regina Holliday: “And the whole world clapped!!!”

Annaliz Hannan: “Sometimes the government gets it right and we, the collective healthcare consumer, win. This is our day as Susannah Fox accepts the post as Chief Technology Officer of Health and Human Services. There is no doubt she is tech savvy but it is her trusted voice in advocating for your access to your health data that makes this a banner raising day.”

Craig DeLarge: “Sweeet! Good on you! Good on us!”

Alexander B. Howard: “This is exceptionally good news for the American people.”

Joe Graedon: “Pretty amazing. Some days the good guys win! Hallelujah. Susannah earned this through vision, hard work and attention to detail. Hooray.”

Marianne O’Hare: “She’s a powerhouse! But also has that wonderful skill of making data-speak sound like a bedtime story.”

Christopher Snider: “Big news. Big deal. Congrats Susannah!”

Matthew Holt: “The lunatics have taken over the asylum in a great way today. @SusannahFox is now CTO of HHS”

Nick van Terheyden: “How cool is that – Susannah Fox appointed as CTO for HHS”

Jose Gomez-Marquez: “Congratulations! We couldn’t be more happy for @SusannahFox as the new CTO of @HHSGov and friend to geeks around :)”

I just wanted people to get to know her, a little. This is not just another by-the-book administrative appointment. This is special. Susannah is special.

Infographic of the Week: HHS Infographics Collection!

HHS Infographics on Flickr
Flickr: Group: HHS Infographics: https://www.flickr.com/groups/hhsinfographics/

I just discovered a Flickr group that collects infographics from the US Department of Health and Human Services. WOW. Talk about a great resource! There are many infographics in the collection, and also marketing images for specific health challenges or initiatives.

HHS Infographics on Flickr

This isn’t all they have, though! You can many of these in sets or albums from the HHSgov Flickr Stream.

Flickr: HHS: Sets: Health Care Infographics: https://www.flickr.com/photos/hhsgov/sets/72157633968047018/

Flickr: HHS: Sets: HHS Infographics: https://www.flickr.com/photos/hhsgov/sets/72157632180365890/

Now, it is completely wonderful to have a one stop shop to go hunt health infographics from a reliable source and of known high quality. Extremely useful! But this is even better than that. Because these are in a Flickr Group, there are many other things you can do.

If you have a Flickr account, you can request to join to track the images that appear in the group, or you can use the RSS feed from the group in your feed reader.

You could set up a computer display in a public area, and start the “slideshow” view from the group as a way to engage the public around quality health information.

Because these are licensed as “United States government work,” you can download these, re-use them, post them yourself, put them on your website, edit and modify them. As they say:

Anyone may, without restriction under U.S. copyright laws:
* reproduce the work in print or digital form;
* create derivative works;
* perform the work publicly;
* display the work;
* distribute copies or digitally transfer the work to the public by sale or other transfer of ownership, or by rental, lease, or lending.

Niiiiiice.

However, because these are in Flickr, the absolute easiest way to share them is to just embed them on your webpage or site, or share the link wherever you wish. Here’s an example.

Recently, I’ve been seeing many conversations on social media, on Twitter, Facebook, and in blogs, about issues with patients access to their electronic health record and problems with the accuracy of the information in their record. Right now, this is again a timely issue. The HHS has a series of four short infographics on exactly this topic. I can choose one or any or all and, with a Flickr account, grab the embed code to put them in this blogpost without having to download or upload or rename or identify or worry about the accessibility of the code. Here’s what it looks like.

Know Your HIPAA Rights #1Know Your HIPAA Rights #2
Know Your HIPAA Rights #3Know Your HIPAA Rights #4

If someone clicks on any of the four images above, it will take them to the original image, in a larger size. The source is right there, and I didn’t have to do the work. So very helpful. I love this resource. So glad I found them!

Concerns & Clarification on the FDA Guidelines for Social Media (#FDAsm)

FDASM: FDA on Social Media

Last Tuesday afternoon, there was a Twitter chat on the new FDA guidance on social media that was hosted by the medical librarians group (#MedLibs), but which engaged an audience that also included healthcare professionals, lawyers, and communication specialists. It was a very interesting chat that touched on concerns, assumptions, misunderstandings, clarifications, and resources. You will find many of these excerpted from the full conversation and highlighted below. First, though, here is a high level summary.

Concerns included the potentail for a “chilling effect” that might impact on education, innovation, professional and patient public communications, research and clinical trial recruitment; responsibility (who is responsible for what/when/where/how with respect to health social media communications); effectiveness of social media controls for their intended purposes and the costs/benefit assessments; the role of identity, honesty, and transparency in health social media communication; and whether the guidelines will promote inclusion or foster exclusion of relevant voices in useful conversations.

Clarifications sought: plain language summaries of the guidelines; description of the potential and expected impacts on various communities of practice, including health education and patients; the relationship and responsibilities of employers and employees in their social media identity management and communications; and the issue off-label use conversations outside of pharma entities.

Clarifications which appeared during the chat (but which are note from the FDA, and therefore not the authoritative word with respect to these issues): who is covered by the guidance; community and individual efforts to create plain language distillations of the guidance; context; and a reminder that freedom of speech does not equal freedom of consequences for that speech.

For Medical Librarians: role for medical librarians in supporting and demonstrating best practices in Twitter chats; role for medical librarians in supporting education around the FDA’s guidance for their institutions as well as for patients and the public; and a caution about medical librarians being potentially excluded from social media as part institutional image controls as well as potentially as an impact of the guidance.

Takeaways: how to format an FDA-style tweet; avoid creating branded accounts for free conversation; encourage individuals to create personal accounts that are not branded and are distinct from the brand; consider correction of health misinformation as an opportunity; avoid perception of “practicing medicine” on social media, but discussions are alright; consider commenting on the FDA draft guidelines before September 17.

In addition, the conversation included discussion of best practices for identifying tweets as representing personal opinion, as well as a rich collection of resources.

CONCERNS

CLARIFICATION NEEDED

CLARIFICATION RECEIVED

FOR MEDICAL LIBRARIANS

TAKEAWAYS

FURTHER QUESTIONS

RESOURCES

Using Twitter to Counteract Hype, Part 2 – Hashtags of the Week (HOTW): (Week of August 11, 2014)

CDC Combats Ebola Hype with Twitter Chat August 8, 2014

Last week, I showed you some of the ways in which the healthcare community is using Twitter to combat hype and misinformation about Ebola. This week there is a more specific example of the same idea — how the Centers for Disease Control scheduled a Twitter chat to answer questions in public for clinicians and healthcare providers about the Ebola outbreak in Africa.

There are some surprises in this collection. Some surprising questions, some surprising answers, and sometimes the surprise is in who is doing the answering. The conversation around bleach is especially interesting. Also, notice who is retweeting what the CDC says. This is a small sampling, but many many people passing along the information, and this is important for spreading the word.

THANK YOU, CDC

EXTRAS


First posted the the THL blog: http://thlibrary.wordpress.com/2014/08/11/using-twitter-to-counteract-hype-part-2-hashtags-of-the-week-hotw-week-of-august-11-2014/

FDA On Social Media: Time to Pay Attention, Take Two

FDASM Campus Forum Feb 16SL: Virtual Ability: Introduction to the FDASM
FDASM Transcripts Wordle23andMe, reduced

Remember five or so years ago when we put together a campus event about the FDA call for input on social media guidance? I blogged about it a lot. I’m sure many of you are already aware of the new FDA Social Media draft guidelines that were, at long last, released last month.

Recently I heard an interview with David Harlow about the new draft guidelines. I was very surprised when I heard him say that the FDA sent a warning letter to a company for clicking “like” on a patient’s Facebook post. That seemed a bit over the top to me, although I confess I haven’t yet found the original warning letter. I had been inclined to just trust that after thinking about this so long, the FDA would come out with something helpful, but it sounds like that isn’t what happened. Responses from the drug companies seem to be along the lines of just avoiding the whole problem, if the FDA is going to be so challenging and confrontational. Responses from folk working actively in HCSM are that the FDA is not getting the point or purpose of social media engagement, and that the guidelines are sufficiently restrictive as to make it impossible to adhere to the specifications.

I know that I need to know more about this, and I believe that readers of this blog do also. The period for public comment is over in September, so there is very little time to respond. My fault — I should have paid closer attention to this sooner.

BACKGROUND

For context, I’d like to first remind people of the comments we filed with the FDA during the original call for comments. Where it sounds like things have broken down is with respect to our third point (#3): “the potential to be perceived as interfering with free speech of the public or creating an undue and insupportable burden for industry and the healthcare communities,” and to the concerns about use of social media within an educational framework.


FDA-2009-N-0441 Docket Comments, University of Michigan Public Forum: http://www.slideshare.net/umhealthscienceslibraries/fda2009n0441-docket-comments-university-of-michigan-public-forum

Here are my slides from five years ago, just to provide context for the background of the conversation.


FDA Social Media Guidelines – Introduction http://www.slideshare.net/umhealthscienceslibraries/fda-social-media-guidelines-introduction

Now, here are some links about where things stand today, plus the presentation by David Harlow, which I encourage you to watch.

DAVID HARLOW


FDA Social Media Changes that May Affect Healthcare https://www.youtube.com/watch?v=aEutmz0kFsM

#FDAsm – FDA Releases Draft Social Media Guidance Five Years After Public Hearing http://www.healthblawg.com/2014/06/fdasm-fda-releases-draft-social-media-guidance-five-years-after-public-hearing.html

FDA Social Media Guidance – Hangout on Air http://www.healthblawg.com/2014/07/fda-social-media-guidance-hangout-on-air.html

PUBLIC HEARINGS

2009: Public Hearing on Promotion of FDA-Regulated Medical Products Using the Internet and Social Media Tools: http://www.fda.gov/AboutFDA/CentersOffices/OfficeofMedicalProductsandTobacco/CDER/ucm184250.htm

July 10, 2014: Social Media Guidance Webinar – July 10, 2014: http://www.fda.gov/AboutFDA/CentersOffices/OfficeofMedicalProductsandTobacco/CDER/ucm403810.htm

FDA ANNOUNCEMENT

FDA Issues Draft Guidances for Industry on Social Media and Internet Communications About Medical Products: Designed with Patients in Mind http://blogs.fda.gov/fdavoice/index.php/2014/06/fda-issues-draft-guidances-for-industry-on-social-media-and-internet-communications-about-medical-products-designed-with-patients-in-mind/

Draft Guidance for Industry on Internet/Social Media Platforms: Correcting Independent Third-Party Misinformation About Prescription Drugs and Medical Devices; Availability http://www.gpo.gov/fdsys/pkg/FR-2014-06-18/html/2014-14221.htm

NOTE: This is where to file comments >>
[Docket No. FDA-2014-D-0447] Draft Guidance for Industry on Internet/Social Media Platforms: Correcting Independent Third-Party Misinformation About Prescription Drugs and Medical Devices; Availability https://www.federalregister.gov/articles/2014/06/18/2014-14221/draft-guidance-for-industry-on-internetsocial-media-platforms-correcting-independent-third-party

DRAFT GUIDELINES

Guidance for Industry: Internet/Social Media Platforms with Character Space Limitations— Presenting Risk and Benefit Information for Prescription Drugs and Medical Devices (June 2014) http://www.fda.gov/downloads/Drugs/GuidanceComplianceRegulatoryInformation/Guidances/UCM401087.pdf

Guidance for Industry : Internet/Social Media Platforms: Correcting Independent Third-Party Misinformation About Prescription Drugs and Medical Devices
http://www.fda.gov/downloads/Drugs/GuidanceComplianceRegulatoryInformation/Guidances/UCM401079.pdf

Guidance for Industry: Fulfilling Regulatory Requirements for Postmarketing Submissions of Interactive Promotional Media for Prescription Human and Animal Drugs and Biologics (Jan 2014) http://www.fda.gov/downloads/Drugs/GuidanceComplianceRegulatoryInformation/Guidances/UCM381352.pdf

ONC Partners with Dr. Oz to Spread the Word (#BlueButton) — Hashtags of the Week (HOTW): (Week of June 16, 2014)

BlueButton on Twitter

The Blue Button was some of the biggest buzz at Health Data Palooza. Following #hdpalooza, the Office of the National Coordinator for Health Information Technology partnered with the famous and popular media personality, Dr. Oz through his affiliated service, ShareCare, to co-sponsor a Twitter chat about the Blue Button and what it can do for the American people. For those who haven’t already heard, the Blue Button is a tool for accessing your personal health records.

I’m taking this opportunity to also show you some special Twitter search features and how they work. Today, I’ll cluster the examples by type of search, and in Part 2, I’ll show how to do these special searches.

REGULAR SEARCH

SEARCH PHOTOS

SEARCH VIDEOS

SEARCH NEWS

SEARCH LINKS


First posted at THL Blog: http://thlibrary.wordpress.com/2014/06/17/onc-partners-with-dr-oz-to-spread-the-word-bluebutton-hashtags-of-the-week-hotw-week-of-june-16-2014/

Health Data Palooza (#hdpalooza) — Hashtags of the Week (HOTW): (Week of June 2, 2014)

Health Data Palooza

“Health Datapalooza is a national conference focused on liberating health data, and bringing together the companies, startups, academics, government agencies, and individuals with the newest and most innovative and effective uses of health data to improve patient outcomes. … The hallmark of the event is a national competition that searches for the best and most innovative uses of health data in apps and products. The competition culminates in live demonstrations of the winning applications to Health Datapalooza attendees.”

Top 10 Datasets for Health Hackers: http://rockhealth.com/2014/05/top-10-datasets-health-hackers/

App Demos: http://healthdatapalooza.org/agenda/live-app-demos/


First posted at THL Blog: http://thlibrary.wordpress.com/2014/06/02/health-data-palooza-hdpalooza-hashtags-of-the-week-hotw-week-of-june-2-2014/

CDC Grand Rounds on Autism & the DSM5 — Hashtags of the Week (HOTW): (Week of April 28, 2014)

Pic of the day - Puzzles

I had a half page long list of hashtags I was thinking about using for this week. And then I stumbled into the end of the #CDCGrandRounds on autism and the new DSM. I had read about the NIH seeking public comments on the impact of the DSM5 on autism diagnosis. This is because of concerns that the shift in how to diagnosis is resulting in a decrease in diagnoses resulting in people not getting needed services. That derives from the DHHS IACC report: IACC Statement Regarding Scientific, Practice and Policy Implications of Changes in the Diagnostic Criteria for Autism Spectrum Disorder. That’s pretty intense. So when I saw the CDC was having a Grand Rounds on the topic, live streaming it, with an active Twitter back channel, and then a followup Twitter chat the next day also sponsored by the CDC (#AutismPHGR – Autism Public Health Grand Rounds), well, how very interesting! If you look at WHO was tweeting, it reads like some sort of Who’s Who on the topic. Very interesting indeed. I hope you think so, too.


First posted at THL Blog: http://thlibrary.wordpress.com/2014/04/28/cdc-grand-rounds-on-autism-the-dsm5-hashtags-of-the-week-hotw-week-of-april-14-2014/