Category Archives: Science2.0/Health2.0

Promoting Human Rights Through Science: What do we do, What can we do, and What’s right to do?

Screenshot of title page

Screenshot of the title page of the article. Please go to the article itself for full description.

“Promoting Human Rights Through Science.” That’s the title of a new article, available today from Science Magazine. (Ironically, unaware of this, today I wore my “March for Science” t-shirt to the office as a “casual Friday” thing.)

Promoting human rights through science
Lauren Segal, Ryan Dz-Wei Chow, Brijesh Kumar, Jenny Nguyen, Kun-Hsing Yu, Jennifer Chen, Emre Ozan Polat, Kaitlyn Elizabeth Porter, Michelle Kelly-Irving, Israel Bimpe, Kristy A. Winter, Runxi Zeng, Majid Ahmed, Dustin Ray Saalman, Joshua Isaac James, Michal Kosinski, Easton R. White, Fernanda S. Oda, Hope Bretscher, Perrine Hamel, Swati Negi, Ali Jawaid
Science 06 Oct 2017:
Vol. 358, Issue 6359, pp. 34-37
DOI: 10.1126/science.aaq1083
http://science.sciencemag.org/content/358/6359/34

I know for myself, it has always been important to me to have my work include opportunities for advocacy for others, a chance to make a difference, to better lives. In the Dentistry Library, we worked to support outreach, information, education, research, and clinical work in the last major social healthcare frontier in the USA. In my job as the Emerging Tech Informationist I am able to be part of the conversations around adopting and developing new technologies and keep the questions in mind of how patients and the public are being included, and how technologies create new disabilities even as they create new opportunities. As a researcher, I work to the best of my ability to ensure that my work has the potential to not only inform interesting questions, but to empower others to apply our work and methods in their own environments. I try to publish in open access journals, I try to use open source tools. I try to make my methods crystal clear and replicable. I try to share my data. I try to partner, widely, and sometimes that means compromising and negotiating and educating around issues of intellectual property, access, openness, transparency, and so forth.

In today’s SCIENCE article, these are the human rights they highlighted:

Right to food
Right to health
Right to be remembered
Right to information
Right to education
Right to privacy
Right to a healthy environment
Right to culture

Of course, by far the most populous section was “The Right to Health,” with discussions of communities, cultural context, disparities, vaccines, delayed diagnosis, disasters, social determinants of health, health literacy, and policy loopholes that can be exploited in ways that undermine health rather than promote it. Powerful stuff.

We need to push this out, especially those of us on social media. This is the sort of thing that directly impacts on how the public view science and scientists, and thus has the potential to downstream impact on funding. But that can’t happen unless the public is aware of this, so it’s important to get this out beyond the Academy. It’s important for us to expand upon this, to tell our own stories of why human rights matter to us, why science matters to us. Just as with poets, and pop singers, and athletes, most of us aren’t doing this to get rich, and most of us won’t get rich. Most of us do research because we want to make a difference, we love the science and research and learning new things, and we see exciting opportunities when we place those side by side. How can we help the general public see that in each of us, and in science overall?

More important, can we use articles like this, stories like these to engage with the public in conversations around these topics. Are the rights mentioned here the ones that are actually important to the people around us, and to our society at large? If so, how do we tell those stories so that they see we’re there, too? If not, why not? Is there something people need to know that they don’t? Is there something they know that we don’t? I’m a big fan of the Cochrane Collaboration’s efforts to include patients on the research teams, not only to inform the process and to support “translation” of findings into practice, but perhaps most importantly to shape what questions are asked and studied, to help assure that these are the problems that really matter. Making the stories of science and scientists widely available and engaging with the public around them is the first step in entending that model into all of science. You can help. Share this article, talk about it, challenge it, ask questions, ask for more.

Accessibility through Social Media for Libraries 101

Just a quick collection of resources I find helpful in using social media to create better and broader access (and accessibility) for library events and more.

ACCESSIBILITY

There are many ways of interpreting the word “access.” The ones I encounter most often are 1) access (as in this thing exists somewhere I can find it or get hands on it, which I think of as ‘discoverability’) and accessibility (as in I can use this, even if I’m a person with a disability, whether my functional difference is visible or invisible).

Golden rules of social media accessibility: http://www.danya.com/files/sma_poster.pdf

Accessibility Hub: Social Media Accessibility – Facebook, Twitter, and YouTube: http://www.queensu.ca/accessibility/how-info/social-media-accessibility

Social Media for People with a Disability: https://mediaaccess.org.au/web/social-media-for-people-with-a-disability

SSB Bart Group: Accessibility in Social Media: http://www.ssbbartgroup.com/blog/accessible-social-media/

ePolicyWorks: 5 Things: https://www.epolicyworks.org/epw/wp-content/uploads/2013/11/ePolicyWorks_SocialMediaAccessibilityTips.pdf

District of Columbia: Office of Disability Rights: Technical Assistance Manual: Section 508: Website and Social Media Accessibility: https://odr.dc.gov/sites/default/files/dc/sites/odr/publication/attachments/Web%20and%20Social%20Media%20AccessibilityTechnical%20Assistance%20Manual.docx

Accessibility U: Accessible Social Media: http://accessibility.umn.edu/tutorials/accessible-social-media

Global Disability Rights Now: Creating Accessible Social Media Campaigns: http://www.globaldisabilityrightsnow.org/sites/default/files/related-files/243/Social%20media%20and%20accessibility.pdf
[comment: I find it super ironic that a site on disability rights is providing accessibility content as a PDF.]

LIBRARY EXAMPLES & ARTICLES

Use of social media by the library, current practices and future opportunities: A white paper from Taylor & Francis: http://www.tandf.co.uk/journals/access/white-paper-social-media.pdf

University of Virginia: Library: Legal Information about Media Accessibility: http://www.library.virginia.edu/services/accessibility-services/media-accessibility-resources/legal-information-about-media-accessibility/

Social Media and the Science Library: How It Really Works: http://www.rsc.org/globalassets/14-campaigns/m/lc/lc16026/royal-society-of-chemistry-social-media-ebook.pdf

#FridayReads: Library and campus engagement through social media: https://link.highedweb.org/2017/02/fridayreads-library-and-campus-engagement-through-social-media/

TOOLS

One of the benefits of social media is that it makes content more readily discoverable by a broader audience in time and space. One of the drawbacks is that many social media platforms aren’t easy to use by people with various disabilities. This is just a tiny sampling of some of the information or tools that might help with some parts of that, although not others.

Facebook: https://www.facebook.com/
– Facebook Accessibility: https://www.facebook.com/accessibility/

Twitter: https://twitter.com/
– Easy Chirp: http://www.easychirp.com/

Lanyrd: http://lanyrd.com/

Storify: https://storify.com/

SOCIAL MEDIA POLICIES

If you don’t have a social media policy, you will probably live to regret it. Here are some examples.

Why Have a Social Media Policy for Your University Library? http://www.proquest.com/blog/2013/why-have-a-social-media-policy-for-your-university-library.html

Creating a Social Media Policy: What We Did, What We Learned: http://www.infotoday.com/mls/mar13/Breed–Creating-a-Social-Media-Policy.shtml

Example social media policies from libraries

Cleveland Public Library: https://cpl.org/thelibrary/usingthelibrary/policy-on-the-use-of-cpls-social-media-sites/
Monroe County Public Library: https://mcpl.info/geninfo/social-media-policy
Plum Creek Library: http://www.plumcreeklibrary.org/jackson/Docs/social%20media%20policy.pdf
TAZEWELL COUNTY PUBLIC LIBRARY: https://tcplweb.org/wp-content/uploads/sites/22/2015/03/TCPL-Social-Media-Policy.pdf
Thomas Crane Library: http://thomascranelibrary.org/sites/default/files/Social%20Media%20Policy.pdf
UNC University Library: http://blogs.lib.unc.edu/news/index.php/social-media-policy-for-library-employees/
Washington State University Libraries: http://www.wsulibs.wsu.edu/policies/social-media

GUIDELINES ETC.

Where to start first

Federal Social Media Accessibility Toolkit https://hackpad.com/Federal-Social-Media-Accessibility-Toolkit-xWKKBxzGubh

Federal Social Media Accessibility Toolkit Hackpad: Improving the Accessibility of Social Media for Public Service https://www.digitalgov.gov/resources/federal-social-media-accessibility-toolkit-hackpad/

More resources

Section 508: Create Accessible Video and Social Media https://www.section508.gov/content/build/create-accessible-video-social

Media Access Australia: Social Media for People with a Disability: https://mediaaccess.org.au/web/social-media-for-people-with-a-disability

Improving the Accessibility of Social Media in Government: https://www.digitalgov.gov/resources/improving-the-accessibility-of-social-media-in-government/

Social Media and Accessibility: Resources to Know:
https://www.digitalgov.gov/2015/01/02/social-media-and-accessibility-resources-to-know/

Your Opinion Matters

Legendary Phoenix: Your Opinion

I find myself disturbed by today’s TeeFury special, by Legendary Phoenix. The image shows Rick, a stereotypical scientist in a white lab coat with messy hair, a unibrow, eyes ripe with ennui, bags under his eyes, a pointy nose, and a glum descending (and condescending) mouth. The scientist is saying (in a word bubble), “I’m sorry, but your opinion means very little to me.”

TeeFury: Legendary Phoenix: Your Opinion

I expect some science geeks to jump up and down with glee and say, “You see? It’s not about OPINIONS! Ha! Gotcha!” However, one of the greatest challenges in science communication and science literacy is this perception that scientists are unpleasant, self-centered, passionless, people unwilling to listen or hold a civil conversation within the public sphere. “Your opinion means very little to me” could be “because I really prefer evidence over opinion” or it could be “because I’m socially inept and don’t care what people think” or it could be “because I bloody well don’t think you have anything to offer, and so I’m not listening” Or all of the above (and more).

And however you read it, these imply scientists have nothing to learn from experience, no compassion, no courtesy, no duty to educate or inform or improve science literacy among the broader populace, no understanding of intellectual sharing or community building, etcetera. Of course, real life is actually the opposite, on all counts, but this is the common perception.

This common perception has resulted in dangerous and ill informed policy decisions, reduced funding for research, strategically ill-applied research funding, poor translation of science findings into practice, and ultimately, unnecessary deaths and misery among those (all of us) who would benefit from the implementation of scientific discoveries.

“Scientific literacy is an urgent and important issue. Why should we care? The answer is simple: Our way of life and our survival are at stake.” – G. Wayne Clough, Secretary Smithsonian Institution

Your opinion matters

What I want to say is, “Your opinion matters. It matters because I care about how you got to your opinion, and I can learn from that. It matters because you might have information or resources or data that informs that opinion which aren’t available to me. It matters because I might have information or resources or data that aren’t available to you, and which might help both of us. It matters because if we put together what you have and what I have and more, we might get a picture of the problem or solution that are closer to what we really need. It matters because what how you feel about your opinion and how I feel about my opinion give an emotional context that is important in telling stories and shaping policy. It matters because IT MATTERS. So, tell me what your opinion is, share your sources and stories, listen to mine, and let’s learn together.”

I’m not buying the t-shirt. Or maybe I should, so that I can have this conversation over and over again.

Insights into the Lived Healthcare Experiences of the Transgendered (#TransHealthFail)

#TransHealthFail

#TransHealthFail

Several years ago, I was in an elevator with a then-local clinician (no longer here) who was complaining to me about how unhappy he was with his clinical practice. He had bought into the practice from another clinician who was retiring, and it wasn’t until he moved here and began actually working there that he discovered half of his patients were transgendered. I still remember how his face twisted up into a knot and his beard waggled as he snarled with disgust about being forced to treat “THOSE people.” He told me, “You don’t know. THEY are EVERYWHERE around here! How could I expect that?” I got out of the elevator as soon as I could. And then I started trying to plan a trans education event for our library. It took some years to be able to make it happen.

I was so excited when I heard about the Trans Health Fail hashtag during the Stanford Medicine X conference. I’ve been wanting to blog about it for a couple months, and finally it is happening. The post is divided into four sections: reports of experiences (mostly with insurance, staff, and clinicians); longer personal testimonials; healthcare reactions; and popular media. There is even a section where trans people have given kudos to the absence of failure, when folk have gotten it right. Most important take-away lessons to learn? Names are important (not just for people who are transgendered, but perhaps especially for them). Privacy is important. Respect is important. Information is important. Access to care is life-saving. Another big part of the conversation centers around the high mortality of transgendered persons, both from violence, and stigma. The basic assumption of what SHOULD be happening in healthcare gets back to “First do no harm.” A lot of the perceived harms which are described could be changed fairly easily just by better education of healthcare professionals of all sorts, and the office and support staff in healthcare facilities. Some of them make complete sense to professionals working inside the healthcare system, but obviously did not to the person on the other side. If you haven’t yet noticed this conversation, it’s worth taking a few minutes to explore. It could save lives. And if you are a healthcare provider who actually can and will treat transgender persons, please be aware of the Provider Self-Input Form for the Trans & Queer Referral Aggregator Database from RAD Remedy

LIVED EXPERIENCES

LIVED EXPERIENCES: Access to Care

!! https://twitter.com/TGGuide/status/629892052914991104

LIVED EXPERIENCES: Insurance

LIVED EXPERIENCES: Healthcare Environments & Systems

LIVED EXPERIENCES: Supporting Roles

LIVED EXPERIENCES: Clinicians

!! https://twitter.com/anaphylaxus/status/639815813495701504

LIVED EXPERIENCES: Children

LIVED EXPERIENCES: Done Right

TESTIMONIES

HEALTHCARE RESPONSE

MEDIA ATTENTION

Atlantic

BitchMedia ??

Buzzfeed

Cosmopolitan

DailyBeast

DailyDot

Distractify

FacesOfHealthCare

Feministing

Fusion

HuffPostGay

HuffPost

Indiana

MarySue

Mashable

Metronews Canada

Mother Jones

NewNowNext

Patient Opinion

Vice

#MakeHealth RETURNS!

Make Health Fest 2015

We are gearing up for this year’s repeat of the fantastic Make Health event, a maker event themed around healthcare.

Make Health Fest: http://makehealth.us/
(Pssst! Check out #MakeHealth on Twitter)

This year (THIS WEEKEND!!), MakeHealth is a two-day event, with presentations split onto two different days, and booths and demos on Sunday. Check the schedule carefully to not miss something you want to see.

FESTIVAL: Make Health Fest: 11 am – 6 pm, Sunday, October 25th, 2015
SYMPOSIUM: The Nightscout Project, Patient-Driven Innovation, & the Maker Movement: 9:30 am – 12 pm, Monday, October 26th, 2015

This year we have been recruiting some awesome campus and community partners (and the list is still growing!). We are also seeking volunteers of all sorts (and you can volunteer to help at the website). We ESPECIALLY need people to do social media stuff, write up the event wherever you post, livetweet presentations and displays, take pics, help us make the event come alive for those who can’t get here. And if anyone is able and willing to livestream or Periscope, that is another thing we’d love to do (and get requests for) but which hasn’t happened yet. People who volunteer officially get cool swag, so it’s worth signing up as well as just doing it!

If you ARE a presenter, feel free to recruit one of your friends to videotape you and put it up online, but being sensitive to those in the audience who may be less thrilled about being on camera.

We are really excited about this year’s highlights and keynotes:

Susannah Fox was the health lead at the Pew Internet and American Life Project, and is now Chief Technology Officer of the U.S. Department of Health and Human Services (HHS). Whoa. Susannah’s ideas of what qualifies as technology tend toward the broad side. That broad definition makes it easier for her to be absolutely as excited about what makers and real people are doing as much so (if not more) than what professional geeks are doing.

We also have Jose Gomez-Marquez, Director, MIT Little Devices Lab, and Anna Young of Maker Nurse. More information forthcoming about presentations on the patient-led movement to overhaul life with diabetes (a.k.a. the NightScout Project), which you may have noticed under the hashtags #WeAreNotWaiting, #CGMinTheCloud, #DIYPS, #NightScout, #OpenAPS, and probably more.

It promises to be a fantastic event, and we would love your help and participation. If you want to take a look at just how fantastic it was last year, you can do that here.

We #MakeHealth Fest 2014: http://makehealth.us/2014

The WORST Thing About Depression is …

Pic of the day - Not a Happy Musical

There is a fantastic, passionate, profoundly honest, deeply wrenching effort going on RIGHT NOW to try to take the stigma out of depression. What I’m talking about is the movement gathering under the hashtag #TheWorstPartOfDepressionIs. People are telling their stories, and the stories of those they love, with and without names, but always with bald-faced honesty. They describe the ways in which expectations, interactions, judgments, sensations, and experiences serve to compound what is already a paralyzing destructive illness. Here are just a few of these amazing tweets.

* THE BLOGGESS

* EXPECTATIONS

* INTERACTIONS

* JUDGMENTS

* SENSATIONS

* EXPERIENCES

LAST BUT NOT LEAST

At The Movies: Tactile Art & Tech for Autism

David Chesney is Back. This Time With Sean Ahlquist (Art & Architecture) and Sile O’Modhrain (Music). The project being highlighted this time is designed to use a flexible stretch “coloring book” to provide a kind of engaging biofeedback to children with autism regarding the amount of pressure they are using. This would have been fantastic to have when my son was small.

David Chesney: “The research that I do here at the University of Michigan is at the intersection of technology and childhood disability.”


Tactile Art | MichEpedia | MconneX https://www.youtube.com/watch?v=uQU7ZhMvH2k

University researchers and students create device designed to aid in Autism therapy https://www.michigandaily.com/news/university-researchers-and-students-different-fields-study-create-device-designed-aid-autism-th

More videos about the project from Dr. Ahlquist.

Social Sensory Surfaces Research Project from Sean Ahlquist on Vimeo.

Social Sensory Surfaces Research Project https://vimeo.com/125392278

Stretch|PLAY from Sean Ahlquist on Vimeo.

Stretch|PLAY https://vimeo.com/125633678

Social Sensory Surfaces: http://taubmancollege.umich.edu/research/research-through-making/2015/social-sensory-surfaces

Related work from Dr. Chesney on his work with autism.


Software Engineering Class Hacks Autism https://www.youtube.com/watch?v=CUT-Chcffqc

Digital avatars help children with autism – w/video http://www.autismdailynewscast.com/digital-avatars-help-children-autism/21463/snapshot/

Hacking Autism and University of Michigan https://www.autismspeaks.org/blog/2012/05/01/hacking-autism-and-university-michigan

Video games help autistic students in classrooms http://usatoday30.usatoday.com/news/health/story/2012-05-31/video-games-autism-students/55319452/1

More interesting projects by Dr. Chesney & his students.


Untapped Resonance: David Chesney at TEDxUofM https://www.youtube.com/watch?v=GO9HSiUMylE


Engineering with Grace: https://www.youtube.com/watch?v=aDjYoyYfUQE
Engineering with Grace: Software class aims to help one teen communicate: http://ns.umich.edu/new/multimedia/slideshows/21712-engineering-with-grace-software-class-aims-to-help-one-teen-communicate
Computer Science with Soul: http://dme.engin.umich.edu/grace/


Provost’s Seminar on Teaching – Presenter David Chesney https://www.youtube.com/watch?v=FDSwN1MEfnY

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:
AIDS/HIV,
campuses,
citizen science,
crowdfunding,
disaster preparedness,
domestic violence,
education (several of these events for different challenges),
food security,
LGBT,
libraries and museums,
NASA,
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 http://embed.symplur.com/twitter/transcript?hashtag=WHChamps&fdate=07%2F08%2F2015&shour=05&smin=25&tdate=07%2F09%2F2015&thour=00&tmin=00

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 https://www.youtube.com/watch?v=yi1Tw1narVo

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 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.