Category Archives: Health, Healthcare, Support, Science

#ADA25! Tech + Touch + Targets: Part One, “I couldn’t type a hug.”

Screenshots from the White House video of President Obama Celebrating ADA25

Yesterday was the 25th anniversary of the signing of the American with Disabilities Act. I want to describe three technology events that happened around the theme of celebrating this milestone! These three stories include high speed rail, robots, assistive communication devices, virtual worlds, web accessibility, exoskeletons, 3d printing, and more. That’s the tech. But the touch is just as important, if not more so, and the question of what’s left that needs doing is the idea of defining and meeting our targets. Let’s get started.


First, President Obama celebrated, of course, with many people. One was Haben Girma, the first deaf-blind graduate of the Harvard Law School. The President would type words to talk with her, and she would listen with her hands on a machine that translated the typing into Braille. “I couldn’t type a hug,” he said.

Screenshots from the White House video of President Obama Celebrating ADA25Screenshots from the White House video of President Obama Celebrating ADA25

Alice Wong, of the Disability Visibility Project, attended the event through her telepresence robot, and wrote about it later, here.

Screenshots from the White House video of President Obama Celebrating ADA25

The White House has made available both the highlights video (under 3 minutes) and the complete event (about 1.5 hours).

President Obama Celebrates the 25th Anniversary of the ADA

President Obama Speaks at the 25th Anniversary of the Americans with Disabilities Act

Towards the end of his remarks, President Obama described the how his father-in-law’s experience with multiple sclerosis helped to shape his passion for reducing barriers for persons with disabilities, and his awareness of how access to necessary resources can help people grow into their potential, and how that helps all of us.

“And just an aside on this, for a long time, he would not get a motorized wheelchair because he had gotten this disability at a time when they weren’t available and it was expensive, and they weren’t wealthy, and insurance didn’t always cover it. And it just gave you a sense of — Michelle and I would talk sometimes about how much more he could have done, how much more he could have seen — as wonderful as a dad as he was, and as wonderful as a coworker as he was, he was very cautious about what he could and couldn’t do — not because he couldn’t do it, but because he didn’t want to inconvenience his family and he didn’t want to be seen as somehow holding things up.” Remarks by the President on The Americans With Disabilities Act

White House Champions and the Dream of Personalized, Precision Medicine (#WHChamps)

White House Champions of Change - Precision Medicine #WHChamps

A couple weeks ago, I had just started a blogpost on the White House Precision Medicine Initiative, when I heard that within the HOUR there would be an update from the White House on this very topic, livestreamed! I scrambled, livetweeted, and this is no longer the post I had planned to write, but a rather different one, that has taken a good bit more time than what I had planned. The ‘update’ on the Precision Medicine Initiative turned out to be a White House Champions event. I had not previously heard of the White House Champions, but it turns out this is a wonderful series of events that have been going on through Obama’s Presidency honoring community innovators in a wide range of topics & issues where America has needed innovation:
citizen science,
disaster preparedness,
domestic violence,
education (several of these events for different challenges),
food security,
libraries and museums,
open government,
open science,
Parkinson’s disease,
public health and prevention,
science equality for women and persons with disabilities,
suicide prevention,
tech innovation and inclusion,
veterans (several of these events for different challenges),
youth homelessness,
youth violence,
and much, much, MUCH more! My mind is just ringing with all that I’ve missed, and all the wonderful creative innovators I don’t yet know about. How did I miss all of this?

At least I didn’t miss the Precision Medicine event! Here are the honorees, and the treasures they have shared with us, in a very small terse form.

Marcia Boyle (MB’s blogpost about the Immune Deficiency Foundation (IDF). Find them on Twitter at @MarciaIDF and @IDFCommunity)

Hugh Campos (HC’s blogpost about data liberation. Find him on Twitter @HugoOC)

Elizabeth Gross Cohn (EGC’s blogpost on the Adelphi University Center for Health Innovation, their Communities of Harlem Health Revival, and their interactive graphic novel. Find her on Twitter at @Chi_Cohn)

Amy Gleason (AG’s blogpost about CareSync. Find her on Twitter at @ThePatientsSide)

Amanda Haddock (AH’s blogpost about Dragon Master Foundation. Find them on Twitter at @AmandaHaddock and @DragonMasterFdn)

Emily Kramer-Golinkoff (EKG’s blogpost about Emily’s Entourage. Find them on Twitter at @emilykg1 and @EmsEntourage4CF)

Howard Look (HL’s blogpost about Tidepool. Find them on Twitter at @HowardLook and @Tidepool_org)

Dorothy Reed (DR’s blogpost about Sisters Network of Central New Jersey (SNCNJ). Find SNCNJ on Twitter at @sistercentral)

Anish Sebastian (AS’s blogpost about Babyscripts. Find him on Twitter at @ASebastian87 and @Babyscripts)

Here is the best Storify I’ve found of the #WHChamps event, by E. Keeley Moore.

It’s amazing that there were over 1000 tweets per minute at the peaK. Here is the Symplur archive of all the event’s tweets:

Symplur: Healthcare Hashtag Project: #WHChamps

Did you miss it and want to see it? The entire hour-long event was recorded and is available in the White House Youtube channel.

White House Champions of Change – Precision Medicine

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


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)

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)

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:

REFERENCES (Chronological order)


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.

Peter Rothman. Video Friday: DARPA Prosthetics Research. H+ Magazine February 13, 2015.

Peter Rothman. Biology is Technology — DARPA is Back in the Game With A Big Vision and It Is H+. H+ Magazine February 15, 2015.

Max Plenke. These Are the 7 Ways the Government Wants to Change the Human Body for the Future. Tech.Mic June 26, 2015.


Peter Rothman. Restoring Active Memory Replay — DARPA Seeks Super Learning and Enhanced Memory Technologies. H+ Magazine April 28, 2015.

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.


Sara Reardon. The Pentagon’s gamble on brain implants, bionic limbs and combat exoskeletons. Nature News June 10, 2015.

Lily Hay Newman. Researchers Sharing Data Was Supposed to Change Science Forever. Did It? Slate: Future Tense June 24, 2015.

Brian Wang. DARPA wants to engineer from millions of organisms and not just yeast and ecoli. Next Big Future June 25, 2015.

Carl Engelking. DARPA Is Supposedly Engineering Organisms to Make Mars Livable. Discover Magazine June 26, 2015.

Carl Tanaka. DARPA Genetically Engineering Organisms for Terraforming Mars into Livable Planet. ReliaWire June 27, 2015.

DARPA to terraform Mars with human-engineered organisms. Business Standard June 28, 2015.

A Tack Board of Tags (HOTW July 19, 2015)

There have been some fantastic conversations on Twitter this week, on a huge diversity of topics and organized around some intriguing hashtags. I was personally involved with the Summit for the Mayo Clinic Center for Social Media (#MCCSM) and the local systematic review training course (UMTHLSysRev). It was a series of happy coincidences that led me to the events Astrobiology Science Conference 2015 (#AbSciCon); Inspirefest 2015, the future of science, technology, engineering, and mathematics with new perspectives on innovation, leadership and success (#inspirefest2015); and International Association for Suicide Prevention (#IASP2015). I was surprised to find two very relevant Twitter chats that were new to me: hereditary cancer chat (#hcchat) and the Internet of Things chat (#IoTchat). Last but far from least, the nursing-inspired #WhyWeDoResearch tag is a very motiving and inspiring meme to explore. I’ll put just a few examples of each below, hoping to intrigue you enough to go look at these yourself.

Mayo Clinic Center for Social Media | #MCCSM (#mccsm archive)

Systematic Reviews Workshop: Opportunities for Librarians |
#umthlsysrev (#umthlsysrev archive)

Astrobiology Science Conference 2015 | #AbSciCon

Inspirefest | #inspirefest2015

28th World Congress of the International Association for Suicide Prevention, Montreal, 2015 | #IASP2015 (#IASP2015 archive)

Hereditary Cancer Chat #HCchat
(#HCchat archive)

#IoTChat: Internet of Things Twittersphere Chats Evolve | #IoTchat

Why We Do Research Campaign (Weebly sites blocked in UM hospitals) [Campaign video 1; campaign video 2] | #WhyWeDoResearch (#WhyWeDoResearch archive)

La Traviata: Turning Old Pop Culture Into New Pop Culture to Fight Stigma

Pic of the day - Detroit Opera House

Only old fogies go to the opera, right? And young guys trying to impress a girl with how intelligent and posh they are. Right? And why? Because it’s booooooring, and not relevant, unless you study music. Or history. Or music history. Or the Looney Tunes. Right?

Well, do I have news for you. The Metropolitan Opera has gone international with their Live in HD series show in movie theaters, and they are including famous Tony award winning directors and Broadway actors in some of the shows. Professional opera has been trying to recruit a new audience through reaching out into new spaces, and re-interpreting shows in modern scenarios, like the Las Vega “Rat Pack” version of Rigoletto or the 50s diner version of Cosi Fan Tutti, or even the Star Trek version of “Abduction from the Seraglio.” I know of classic operas with new translations of the libretto, but they keep the same plotline and story. Of course, there are also new operas, new approaches to what is an opera, rock operas, heavy metal operas and even a country-western-horror mashup opera.

As far as I know, no one has, however, taken this as far as the Arbor Opera Theater did last week with their new interpretation of La Traviata.

La Traviata

La Traviata. Postcard image courtesy of NNDC.

“Lydia Mendelssohn Theatre, June 11-14, 2015. La Traviata, a new English adaptation created with the National Network of Depression Centers to address the stigma surrounding mental illness.”

Ah, now it makes sense. I bet some of you were wondering why on earth I was talking about opera, when I usually talk about healthcare and/or technology. This is why. (Well, except, I do love opera, in case you haven’t guessed.) The best operas have traditionally taken on difficult and edgy topics, challenged assumptions and cultural norms, poked ridicule at the establishment, and generally done what popular culture does best: Explore, question, and hopefully transform the present. La Traviata, when it was first written, told the story of bias against women of “ill-repute,” a.k.a. courtesans or prostitutes. The rumor is that Verdi had his own personal reasons ( special friend, perhaps) for suggesting that people should be a bit more tolerant, and trying to foster a sense of compassion to counter the stigma. This brought us La Traviata, and generations of viewers who weep at the end as the “courtesan with a heart of gold” fails to survive largely due to the classic public health indicators of low socioeconomic status and lack of access to healthcare. Stigma of all sorts is a contributing public health issue, with over twelve THOUSAND articles on the topic in MEDLINE. Almost half of those relate directly to mental health or mental illness, and the rest mostly connect tangentially, through sexual preference, victim status or survivorship, gender identity, and disease diagnosis status (HIV, cancer, leprosy, and more).

This new and revised vision of La Traviata kept the wonderful music, the names of some of the characters, and the stigma, but changed the plot and storyline and the source of the stigma. The star of the new La Traviata remains Violetta, but now Violetta suffers from mental illness. Violetta is a beautiful young woman, self-medicating in a struggle to manage her symptoms, without her friends realizing that it is an illness and could be treated. As with so many in real life who struggle to alleviate their own misery without understanding the root cause, her strategies for self-medication complicate the challenges instead of helping. Those familiar with the story of La Traviata know to expect a death scene at the end, but our Violetta dies not of tuberculosis and poverty, but misunderstanding and a drug overdose.

La Traviata Death Scene

La Traviata Death Scene, photo courtesy of Amanda Sullivan

When I first heard about this production, the vision of interpreting the story around depression and bipolar and stigma, actually partnering with the National Network of Depression Centers, I could not have been more excited. I was thrilled with the concept, and could only wait to see the show because there were no previews online! Not everyone felt the way I did. At the performance, I overheard people expressing some reluctance. Would it be the show that they loved already? How could this work? Did it really make sense to make this big of a change? At the first intermission, some were still hesitant, but by the final intermission the staunchest resistance near me had converted to, “I’m surprised! This really works!”

It did, and does succeed as a story. Arbor Opera Theater is not the Lyric or the Met. We don’t have the star performers, the grand sets, the enormous stage. Despite that, I found myself lost in the story and music. The New Orleans setting was a perfect choice for the context of the story. The sex scenes were dynamic enough to make me feel like a voyeur. Several audience members commented on the strong performance by Augustin (Drake Dantzler) as Violetta’s youthful true love. The arguments with her lover’s father, Senator Germont (Evan Brummel, who acts brilliantly as well as beautifully sculpting language with the musical notes), successfully portrayed him with rich subtlety as a villain operating from the best of intentions. People near me said, “I could have done the same thing,” and “I know parents like that.” His repentance at the end, in the dream sequence, made me wish it was not a dream. When the final scene approached, my reaction was, “Oh, no! She’s so tiny, she doesn’t have the body mass to offset the meds!” I had willingly suspended disbelief, and bought into the performance. A part of me believed that Violetta (Kacey Cardin) was the tiny, sexy, blonde woman with the big voice, tough and fragile at the same time.

La Traviata - Full Cast

La Traviata, Cast, photo courtesy of Amanda Sullivan

The actual singing soared, and for the most part the libretto succeeded in both revealing the story and supporting the singers. There were a few rough spots in the libretto that didn’t quite lay well for the voices and which were jarring to the audience, disrupting the flow of the story. Perhaps a bit of polish, a touch more lyricism, and a bit of rhyme and poetry would address that? Portions of the libretto seemed appropriate for the story, but inappropriate for the character actually singing them. I’d want to touch base with a greater variety of audience members to test out how it worked. That there were moments where the language was a distraction from the story was made evident in audience comments in the hallway. “What does that word even mean?” “Did she have to use that kind of language?” Perhaps that was just the older portion of the crowd? I’m not sure. Perhaps I’m just nitpicking.

Ultimately, I came away wishing strongly to see this performed over and over again, in many interpretations, in many theaters. I want to see this performed by the Met Opera in their Live in HD series. I want to take the train to Chicago to see it at the Lyric. I am deeply grateful to have overheard one of the cameramen at the Saturday performance say that there were plans for this La Traviata to be broadcast on Detroit Public Television in the future. I hope desperately that this means it will also be viewable online, because I want to go out to all my online healthcare communities and get people to watch it, or at least watch excerpts and highlights. I want to spread the word, and engage a much broader audience around this issue, stigma, and this story.

I also found myself asking, why don’t we do this for other important health care and social advocacy stories? Can we take what Shawn McDonald has done with La Traviata as a model to explore contemporary issues? Take classic operas, plays, perhaps Shakespeare, and more. Make them modern and relevant to a contemporary audience, give them new life, and at the same time support the important causes and issues of our day, the challenges and heartaches that shape our society. It would be a far lesser shift to perhaps have Violetta dying of cancer. Could King Lear be rewritten to explore workplace social dynamics, and the need for positive organizational dynamics? What about a new work taking David Copperfield and setting it in India or China? Could Ophelia in Hamlet be recovering from the trauma of clitoridectomy? Rewrite Figaro as casting couch dynamics in Hollywood. Would it be possible to mashup Handel’s Orlando with Virginia Woolf’s surreal Orlando to explore transgendered life? In Rigoletto, instead of being a hunchback, could Triboulet be a person with facial difference? Take L’Elisir d’Amore and rewrite it as a vaccine story. The possibilities are endless.

After the exhilaration and emotional roller coaster of watching the AOT La Traviata Saturday night, I came home and walked the dog. It was dark. The streets were empty. There was a hollowness in the silence that seemed to echo louder because of where I’d been so recently. It felt … appropriate. Let Violetta’s death, the real Violettas of our world, have meaning. Let us move from these hollow spaces to open spaces that show stigma for what it really is.

After a sad opera

Update June 18, 2015: Corrected the name of AOT from Ann Arbor Opera Theater to Arbor Opera Theater. Corrected attribution of images from NNDC to Amanda Sullivan.

What Patients Think About Clinical Trials, Take 2 (#bioethx)

At the Doctor's Office: Push For Help


Within minutes after the previous post went live, I was contacted on Twitter by another patient advocate, Willow, also known as Serious Skeptic. She* expressed another wide area of patient concerns about clinical trials, ones that were new to me, and which deserve representation in this post, even if they aren’t from the official public #PatientChat event. Because Willow has a locked account, and I respect that, I asked her permission to share the links and the essence of some of her private tweets. The following is posted with her consent, but represents my words and distillation of what I learned from her.

Willow was concerned about ethical breaches in clinical trials, especially:
– trials that are designed specifically to promote use of a drug (marketing);
– trials that suppress undesired findings or which fail to publish or share negative findings;
– trials that don’t share their data;
– trials that don’t make relevant or useful findings available to all trial participants.

I had the impression she’d kind of like the research studies to also notify trial participants of publications that do result from their participation. I know, I do, myself, and being a medical librarian, I take notes on my research participation, the names of studies, the names of the PI, and I stalk their publications for years until I see the research in which I participated. I often ask to be alerted, and usually received some sort of polite demurral, and nothing else. I wish they had an email list I could just subscribe to for alerts from their lab.

Anyway, when Willow described clinical trials that are actually marketing ruses, my reaction was, “Whoa! Not really? Doesn’t the IRB process protect against that?” Evidently not. The concept she was describing most is called seeding trials. Here are some links she shared with me, or quotes and/or resources from those articles.

A physician is invited by a pharmaceutical company to take part in a study involving an FDA-approved drug. The physician’s responsibilities entail prescribing the drug for patients and then completing three questionnaires about each patient’s experience with the drug. The questionnaires are quite short and will take about 20 minutes each to complete. The sponsor will pay $1,500 for each completed questionnaire. The physician is very interested in participating because it looks like a great way to increase practice revenues.

Rusczek JP, Rusczek AM. Fraud and Abuse in Clinical Research: Three Case Studies. ABA Health eSource June 2010 6(10). American Bar Association.
– Research Involving Non-Employed Physician Investigators
– Marketing Disguised as Research
– Double Billing

The public has lacked convincing documentary evidence of a long-suspected drug company practice: promoting a new drug by sponsoring a randomized trial in which participating physicians use the drug as they follow the trial protocol. This practice—a seeding trial—is marketing in the guise of science. The apparent purpose is to test a hypothesis. The true purpose is to get physicians in the habit of prescribing a new drug.

Sox HC. Seeding Trials: Just Say “No.” Ann Intern Med. 2008;149(4):279-280. doi:10.7326/0003-4819-149-4-200808190-00012

Seeding trials are designed to appear as if they answer a scientific question but primarily fulfill marketing objectives. Kessler and colleagues (3) portrayed seeding trials as “attempts to entice doctors to prescribe a new drug being marketed by the company” while the company puts its product in the hands of practicing physicians, hoping that the experience of treating patients with the study drug and a pleasant, even profitable, interaction with the company will result in more loyal physicians who prescribe the drug (4).

Hill KP, Ross JS, Egilman DS, Krumholz HM. The ADVANTAGE Seeding Trial: A Review of Internal Documents. Ann Intern Med. 2008;149:251-258.

“Merck’s marketing division handled both the scientific and the marketing data, including collection, analysis, and dissemination; and Merck hid the marketing nature of the trial from participants, physician investigators, and institutional review board members.”

Keim B. Merck Vioxx Study Disguised Marketing as Science. Wired 08.19.08 1:22 PM.

Merck minimized the true risks of Vioxx (Apr 17, 2008)

The maker of Neurontin disguised an effort to promote the anti-seizure drug to physicians as a clinical trial and failed to inform involved physicians and patients, according to a new analysis published Monday in the Archives of Internal Medicine journal.

Girion L. Neurontin study was a sham designed to boost drug sales, researchers say in medical journal. Los Angeles Times June 27, 2011.

Seeding trials are an unethical, dangerous way to market a product. The IRB needs to become a better-equipped committee that can identify seeding trial practices from honest clinical trials, and the FDA needs to demand more transparency from companies sponsoring clinical trials, to better protect public health and the integrity of clinical research.

Varga M. Are Seeding Trials Ethical? Kulkarni Law Firm Blog June 11, 2012 11:11.

Recommended Principles to Guide Academy-Industry Relationships. American Association of University Professors. University of Illinois Press, Jan 25, 2014. See the endnotes on pages 341-2.

Because of the risks and distrust generated by the practice of seeding trials, Willow suggested that it might be wiser to wait to test new meds on your own body until they’ve been out for a few years, unless you are so ill that you have no alternatives. Now, of course, if everyone does that, then there are NO NEW DRUGS because we can’t test them! And that is a situation in which we all lose.

My own choices? I take risks that I won’t ask others to take. I try to be informed about the risks I take. When I participate in a research study, I ask a lot of questions, and I pay very close attention to my body. If my canary-in-the-mine body complains, I withdraw from the study. Well, I would. So far, I’ve never actually needed to withdraw from a research study, but I have ceased taking actual FDA-approved meds prescribed for me that my body couldn’t handle. I’m hoping that the #bioethx chat group will pick up on this topic next, and hoping they can find an invited speaker to talk about what IRB committees have done and are doing to try to address this, to build confidence in medical research.

* I am assuming Willow is a she because I interpret the name Willow as a female name. I have no knowledge or confirmation of that, and it isn’t any of my business anyway. I am using the female pronoun to describe her simply for convenience, and intend no disrespect.


A few clarifications and corrections from the ever thoughtful Willow.

Willow feels my concern about limiting drug discovery isn’t valid, since seeding trial occur for drugs that are already patented. My concern is that fear of seeding trials will scare some participants off of drug trials entirely. Drug discovery trials are legitimate, but the problem remains that it can be difficult to distinguish discovery trials from seeding trials, since the physicians and patients are both kept in the dark by the drug manufacturers.

What Patients Think about Clinical Trial Engagement (#patientchat)

At the Doctor's Office

I had really wanted to participate in this Twitter chat today (#patientchat), on how patients find clinical trials, decide to engage with them, what resources they use, their expectations, and their concerns. I missed the chat, but it is archived in Symplur, so I was able to scroll through, search, dig, prowl around, and find my favorite bits. Since I went through all of that, I thought I’d share it. I’d recommend reading more deeply in the transcript for anyone in clinical trial research or recruitment, patients with basically any kind of diagnosis (as Mighty Casey eloquently said), people interested in translational medicine (where patients play a crucial role), as well as clinicians. Evidently, patients consider clinical trial recommendation from the primary care clinicians to be an obligation, not an optional part of providing care. Who knew? I bet we could automate relevant clinical trial notifications in EHR and as part of clinic visit prep. Why not? Explore below and see what other surprises and creative nuggets appear.