Category Archives: Health, Healthcare, Support, Science

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

Posted on November 5, 2015 by | Leave a comment

#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

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Posted in Health, Healthcare, Support, Science, Science2.0/Health2.0, Twitter

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#MakeHealth RETURNS!

Posted on October 21, 2015 by | 1 comment

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

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Stigma Barricades Ability: Investing in Ability at UM

Posted on October 9, 2015 by | 1 comment

Investing in Ability, UMich

I truly cannot express how delighted and proud I am of the University of Michigan, their Council for Disability Concerns, and especially my dear colleague Anna Schnitzer, for their annual hosting of a rich series of events focused on issues at the intersection of disability and ability. This year, the special topic of focus is: “Stigma, Stereotypes, and Bullying.” I will be hosting one of the events (more on that shortly), but I wanted first to introduce the entire series of events, and highlight resources from past events and one of the early events in this year’s series.

Investing in Ability: Main Page: http://ability.umich.edu/iaw/

A text list of events:

2015 INVESTING IN ABILITY: Stigma, Stereotypes, and Bullying

One of this year’s speakers at a previous event, Michigan Supreme Court Justice Richard Bernstein.

Richard Bernstein, Investing in Ability, University of Michigan Oct 21, 2013 https://www.youtube.com/watch?v=X8akD5vLLhA

Investing in Ability events explore stigma, stereotypes and bullying for persons with disabilities.

Now that you know how to find the rest of the events, here are the highlights from one earlier this week, a very passionate and information-rich presentation on the role of Stigma in Muslim Mental-Health, and how that has very real impacts on all of America.

Stigma in Muslim-American Mental Health https://storify.com/pfanderson/stigma-in-muslim-american-mental-health

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Laboratory Life Online, Part 1 (A HOTW Post)

Posted on October 8, 2015 by | Leave a comment

Second Life: Nanotechnology Island

There has been a lot of science communication (#SciComm) action on Twitter recently centering around what does life look like for real scientists. I have a head start on this because when I was a little tyke, my dad dragged me into the lab with him and told me things like to watch the door of the High Wind Velocity Testing Lab so that the tornado didn’t get out while he was working on his mass spectrometer lithium sample testing. What can I say? I was gullible. So all those fun lifestyle pithy tweets will come in a later post, but for today, here is proof of presence of laboratories on Twitter. For the record, there are a lot more of these in each category, because Twitter’s search limits don’t return complete results for matches to the search criteria. Basically, that means I found a lot of these by browsing, when I should have been able to find them through search. I hope this is a useful resource. Enjoy!

ABOUT LABORATORIES

American Laboratory https://twitter.com/AmericanLab
Lab Design News https://twitter.com/labdesignnews
Lab Guru https://twitter.com/Labguru
Lab Life (@LabLife) https://twitter.com/LabLife
Lab Spaces https://twitter.com/LabSpaces
Lab TV https://twitter.com/LabTVCuriosity
Laboratory EQAS https://twitter.com/LaboratoryEQAS
Laboratory Equipment https://twitter.com/LabEquipment
Laboratory News https://twitter.com/laboratorynews
Laboratory Products https://twitter.com/labproductsnews

MICHIGAN LABS

Cardinale Lab (ecology and biodiversity lab) https://twitter.com/CardinaleLab
Decision Lab https://twitter.com/DecisionLab
Edelstein Lab https://twitter.com/EdelsteinLab
Lauring Lab https://twitter.com/LauringLab
Mahon Lab @CMU_Antarctica https://www.twitter.com/CMU_Antarctica
MiNDLab https://www.twitter.com/MiNDLab_umich
Michigan Tech High Performance Computing (HPC) @MichiganTechHPC https://twitter.com/MichiganTechHPC
MLabs (pathology) https://www.twitter.com/MLabsUM
National Superconducting Cyclotron Laboratory (@NSCL) https://twitter.com/NSCL
NOAA Great Lakes Environmental Research Lab (GLERL) https://twitter.com/NOAA_GLERL
Tronson Lab https://twitter.com/tronsonlab
U.M. Sex Lab https://twitter.com/SexualityLab
U Mich Concept Lab https://twitter.com/UMichConceptLab
University of Michigan Childhood Disparities Research Laboratory (@UMCDRL) https://twitter.com/UMCDRL

U.S. NATIONAL LABS

Ames Laboratory @Ames_Laboratory https://twitter.com/Ames_Laboratory
Argonne National Lab @argonne https://twitter.com/argonne
Berkeley Lab @BerkeleyLab https://twitter.com/berkeleylab
Berkeley Lab CS @LBNLcs https://twitter.com/LBNLcs
Brookhaven Nat’l Lab @BrookhavenLab https://twitter.com/brookhavenlab
DOE Science https://twitter.com/doescience
Energy Sciences Network (ESnet) @ESnetUpdates
Federal Laboratory Consortium for Technology Transfer (FLC) @federallabs
Fermilab @Fermilab
Idaho National Lab @INL https://twitter.com/INL
ISS U.S. National Laboratory, Center for the Advancement of Science in Space (CASIS) (@ISS_CASIS) https://twitter.com/iss_casis
Jefferson Lab P.A. @Jblab
LBNL Media Report @LBNLmediareport
Lawrence Livermore National Laboratory (LLNL) @Livermore_Lab https://twitter.com/Livermore_Lab
Los Alamos National Lab (LANL) @LosAlamosNatLab https://twitter.com/LosAlamosNatLab
Los Alamos National Laboratory (LANL) – Health (@LANL_Health) https://twitter.com/lanl_health
Los Alamos National Laboratory (LANL) – Space https://twitter.com/lanl_space
National Energy Research Scientific Computing Center (NERSC) https://twitter.com/NERSC
National Energy Technology Laboratory (NETL) @NETL_News https://twitter.com/NETL_News
National High Magnetic Field Laboratory @NationalMagLab https://twitter.com/nationalmaglab
National Nuclear Security Administration (NNSA) https://twitter.com/NNSANews
National Renewable Energy Laboratory (NREL) @NREL
NASA Jet Propulsion Laboratory (JPL) @NASAJPL https://twitter.com/NASAJPL
NOAA Atlantic Oceanographic & Meteorological Laboratory (AOML) https://twitter.com/noaa_aoml
NOAA Great Lakes Environmental Research Lab (GLERL) https://twitter.com/NOAA_GLERL
Oak Ridge National Laboratory @ORNL https://twitter.com/ORNL
Oak Ridge National Lab, Manufacturing Demonstration Facility (ORNL Manufacturing) @ORNLMDF https://twitter.com/ORNLMDF
Pacific Northwest National Laboratory (PNNL) @PNNLab https://twitter.com/pnnlab
Princeton Plasma Physics Laboratory (PPPL) @PPPLab
Sandia National Labs @SandiaLabs https://twitter.com/SandiaLabs [Sandia National Labs @SandiaLabsUVM https://twitter.com/SandiaLabsUVM%5D
Sanford Lab @SanfordLab https://twitter.com/SanfordLab
Savannah River National Laboratory @SRSNews https://twitter.com/SRSNews
SLAC National Accelerator Laboratory @SLAClab https://twitter.com/SLAClab
U.S. Army Research Labs https://twitter.com/ArmyResearchLab
U.S. Global Development Lab https://twitter.com/GlobalDevLab

MORE LABS WORTH KNOWING

Arne Lindqvist Lab (cancer research) @LindqvistLab https://twitter.com/LindqvistLab
Boulby Laboratory (deep underground science) https://twitter.com/BoulbyLab
Cavendish Laboratory (physics) https://twitter.com/DeptofPhysics
Happe Lab (autism research) https://twitter.com/HappeLab
Hewlett Packard Labs https://twitter.com/hplabs
HHS Idea Lab https://twitter.com/HHSIDEALab
MIT Lincoln Laboratory https://twitter.com/MITLL
MIT Media Lab https://twitter.com/medialab
National Archives & Records Administration (NARA) Media Labs https://twitter.com/NARAMediaLabs
Public Laboratory (open source) @PublicLab https://twitter.com/PublicLab
Suicidal Behaviour Research Laboratory @SuicideResearch https://twitter.com/suicideresearch
The Food Lab https://twitter.com/TheFoodLab
U.K. National Nuclear Laboratory @UKNNL https://twitter.com/uknnl
Wired Gadget Lab @GadgetLab https://twitter.com/gadgetlab
Wise Laboratory (toxicology) https://twitter.com/WiseLaboratory

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“Most of us will experience a significant diagnostic error in our lifetime”

Posted on September 22, 2015 by | Leave a comment

Today was the webcast for the official release of “Improving Diagnosis in Health Care: Resources to Facilitate Communication Between Patients and Clinicians September 22, 2015.” A distillation of the 8 recommendations includes a focus on improving diagnosis through:

1. Teamwork
2. Education
3. Technology
4. Workflow
5. Culture
6. Reporting
7. Payments
8. Research

There were an incredible number of excellent and insightful statements. I’m hoping later for a full transcript of the remarks! Meanwhile, here is a Storify of reactions to the webcast as it occurred, with what people watching captured as most important.

And the video shown at the end of the webcast.


Improving Diagnosis in Healthcare: https://www.youtube.com/watch?v=fStBWT6fa3E

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Posted in Education, Health, Healthcare, Support, Science

“Send Silence Packing” at University of Michigan

Posted on September 18, 2015 by | 2 comments

Send Silence Packing #SendSilencePacking

Yesterday, I was walking towards the Diag at the heart of the University of Michigan’s Ann Arbor campus. I noticed some chalk drawings on the sidewalk, and took pictures. I noticed some carving on a treetrunk and took pictures.

And then I noticed all the backpacks. Everywhere. And all the students standing, bending, crouching to look at the backpacks more closely. I stopped. I bent over. I read the stories. Each backpack represents one person who died of suicide. Most of the backpacks have their story attached to it, with farewells from grieving loved ones. Some are the actual backpack the person used in their own student experience.

I walked around the collection of backpacks slowly. I snapped photos. I finished looking at one section of the backpacks and thought, WOW. Then I started walking again. And then I stopped again. Because it wasn’t just one section. The backpacks were everywhere. I kept looking, and watching, and taking pics, but did not even try to get pictures of ALL of the backpacks.

As I finally straightened up and was about to leave, I heard a woman’s voice behind me, saying "Hurry up. I don’t want to see this. I know, it’s probably a fact of life, but … " It was a woman who is probably my age, certainly past student age, but dressed like a student in tight leggings and a tshirt, with the arms of a light sweater tied around her shoulders. She and her companion sped up, almost sprinting past the display, her dyed-blonde ponytail bouncing in the sunlight of the beautiful day.

Read more from the Michigan Daily:
https://ssd.umich.edu/article/send-silence-packing-active-minds-university

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Since Katrina, Part Two: How Has Information Access Changed?

Posted on September 1, 2015 by | Leave a comment

Sign: Closed Due to Hurricane Katrina

I mentioned yesterday that Hurricane Katrina changed my life in many ways. Well, my last name might be Swedish, but I’ve never really self-identified as Swedish. My cultural identity has come more from my mother’s side of the family, the Cajun side.

So when Katrina hit, I was riveted; when New Orleans was so damaged I was bereft. I couldn’t find out how the relatives were from the area (they were fine, but I didn’t know). I watched the newscasts almost constantly, for days, until I would shake while watching, couldn’t take it any longer, and felt ashamed that I couldn’t bear to watch. I did what I could from here. I donated money. I helped advertise and promote other Katrina response and recovery fundraising events. That was how I first became part of the A2B3 group which has been so influential in my keeping current about tech trends and tips around the local community and which has informed so many blogposts here. While I’ve been supporting persons with disabilities for most of my career, somehow I hadn’t completely mentally translated that over to the problems they face as individuals and communities in disaster and crisis response, so this (and 9/11) triggered a richer engagement in disaster and crisis preparation and planning, which is also heavily reflected in this blog. And that led to my interest in the SMEM and SMEMchat communities (SMEM = Social Media Emergency Management).

There was one story in particular which I remember vividly from those days which turned into a personal mission. The way I remember it is a little different from how it really happened, but both make good stories. First, the way I tell the story. Even though this isn’t the way it really happened, it could have been.

There was a library school student who was volunteering in the hurricane shelters. I always imagined this being something that happened in the Superdome. Among the evacuees who were not allowed to leave the shelters was a doctor. He was trying to help the other evacuees, but his phone (with his core clinical references) had died, battery had run out of power, and there was no way to recharge it. There were so many people he could help better if he just had a few key resources, but with the libraries under water, loss of power, and being in the shelter, he was dependent on what he remembered. Now, you have to keep in mind, this was two years before the Kindle e-book readers were available, the phones couldn’t hold much, and the batteries were even worse than they are now. What he needed was print, and how on earth was that going to happen?

The student was smart (after all, she WAS a library school student!), and had initiative, so she went and tracked down a listserv for medical librarians, and sent the doctor’s plea for books out to the list. Medical librarians all over the country grabbed books from their weeding piles, and hopped on Amazon to place special rush orders, and had them shipped to … the Dome, of course, right? Mail was delayed (duh). The books finally arrived the day the Superdome was evacuated, and never made it to the doctor. No one knows what actually happened to all those books.

Heartbreaking. Criminal! There has to be a BETTER WAY!! I’ve spent a lot, and I mean A LOT of time brainstorming better ways. I have a vision, a plan in mind, but that’s an entirely different post.

OK, now, what REALLY happened (yeah, I have a vivid imagination). [PS – I’ve been trying to verify this story for a decade, unsuccessfully, and JUST TODAY found the original email to prove it happened.]

Adelaide M. Fletcher: I am an LSU-SLIS student volunteering at a Red Cross Shelter and today I asked one of the Docs there if he needed any reference books. His face lit up and he told me he could really use the Merck Manual and any of the Washington Manuals for Medicine, Pediatrics or Surgery.

I’m sure the situation is similar for other shelters in the Baton Rouge area (there are several), and I would like to collect any of these books and distribute them if possible. If you have any (slightly out of date is okay) or know any medical librarians who would be willing to donate one, please send them to me and I will deliver them to shelters. I can’t speak for shelters outside of the Baton Rouge area, but if I get too many, I’ll try to pass them on through the Red Cross.[Source: MEDLIB-L September 2, 2005]

Adelaide gave her own personal address. People volunteered to send answers to reference questions and look things up. Concern was expressed that mail would be blocked, but then it was verified that her address was in the unscathed zone. The librarians contacted publishers and vendors suggesting they make donations. The books were presumably shipped there, and it is assumed that Adelaide distributed them across multiple shelters. No one ever mentioned the Superdome. No one verified Adelaide’s identity, they just trusted she was who she said she was. As it turns out, she got her MLIS, ended up working in medical libraries, and spent several years continuing the good work she began with this email, working on library recovery from Katrina. From there, she has done a lot of tech geekery in medical libraries, and from there working on community building projects (especially with tech). I already knew she was my kind of person. 🙂 And this sure sounds like a happy ending to that part of the story.

But, what about the information resources? Those books and resources the doc wanted and couldn’t get his hands on? What he was asking for was basically textbooks.

The Merck Manual is now online free to the public from the publisher. Even if he had no phone or battery or computer, if anyone else did, they could look things up or call someone who could.

Merck Manual: http://www.merckmanuals.com/professional

The Washington Manuals are trickier. The Washington Manual of Medical Therapeutics is available online and also as an app for your phone. There is a “free” version for the phone which evidently is fairly limited, and then tries to sell you the full version for a goodly chunk of change.

Washington Manual of Medical Therapeutics with Unbound MEDLINE/PubMed (Free) https://itunes.apple.com/us/app/washington-manual-medical/id533185430?mt=8
Top in-app purchases:
The Washington Manual of Medical Therapeutics, 34th Edition ($74.99) https://itunes.apple.com/us/app/washington-manual-medical/id853052080?mt=8

There is also a copy in the Internet Archive which has over 10,000 views, although I’m not entirely certain that it is a legal or legitimate copy. Indeed, I suspect it isn’t. If that link goes dead, then you’ll know it wasn’t, eh? The official legal copy is this from Lippincott Williams and Wilkins which is available in print and online combined for the same price as the app.

Washington Manual of Medical Therapeutics https://www.lww.com/Product/9781451188516

Textbooks are absolutely critical in medical response to disaster and crisis. I’m glad to see that the ones he wanted are now more accessible, even if there still are barriers to access. I’m also glad to see that there are many MORE medical textbooks available online and as apps (I just wish there were more free ones for those times we really need them). Here are a few more (iOS) examples.

The 5-Minute Clinical Consult 2016
Anatomy and Physiology Made Incredibly Easy
CDC Health Information for International Travel 2014 – The Yellow Book
Davis’ Drug Guide
Infectious Disease Compendium, A Persiflager’s Guide
Lange CURRENT Practice Guidelines in Primary Care 2014
mobilePDR (Physicians’ Drug Reference)
Mosby’s Dental Drug Reference
Mosby’s Drug Reference
Oxford Handbook of Clinical Medicine
Taber’s Medical Dictionary
Tarascon Primary Care

There are a lot more, too. You could easily spend hundreds or thousands of dollars stuffing medical textbook apps into your phone or tablet. And the money is a barrier to having them widely available at the point of need when the need strikes. And these assume that the person reading them is a healthcare provider or student. Sometimes, in disasters, that isn’t the case. When that happens you need high quality accurate information that is right there. Ideally, it would be either something already installed or available where you can find it, or easy to get. I’ve been thinking Kindle’s have way better battery life than most phones, so when my mom died and I inherited her Kindle, I stuffed the extra one chock full of free info that I thought would be good for situations like Katrina. I also bought a solar charger and back up battery and cables. Yeah, call me paranoid, but I want info ready to hand.

But what about alternatives to textbooks, like, oh, I don’t know, journals and articles? “The percentage of open access (OA) articles published in biomedicine in 2005 was 27%,” said Matsubayashi et al in their article, Status of Open Access in the Biomedical Field in 2005. In 2012, that percentage was over half of all newly published articles, per Laakso & Björk. That was articles. The number of open access journal titles in 2005 was 1,988, according to Heather Morrison, who tracks these things and makes both her findings and her data open access as well. By 2013, there were 8,817.

Here are some more resources that weren’t available ten years ago but which we have now. If you can’t afford the medical textbooks, then first aid manuals are a great idea. And when you are thinking about what info you need to respond to trauma, military medical manuals could be a great boon. And we have them now. Most of them aren’t useful for the public, but look for the ones on survival techniques and medical topics.

Internet Archive: US Military Manual Collection https://archive.org/details/military-manuals?&sort=-downloads&page=2

For the most important and useful titles, people have put them in a variety of places online. This way if one goes down, there is a backup.

Special Forces Medical Handbook (2001): http://www.nh-tems.com/documents/Manuals/SOF_Medical_Handbook.pdf

Medical Field Manual (1942): http://www.ibiblio.org/hyperwar/USA/ref/FM/PDFs/FM8-5.pdf

Army First Aid Manual (2002): http://armypubs.army.mil/doctrine/DR_pubs/dr_a/pdf/fm4_25x11.pdf

The Army has made available free PDFs of a lot more of their medical manuals. A lot. Like over 50 other medical titles, everything from training to prevention to evacuation, with specialty manuals for dental, veterinary, radiology, and how to handle casualties, stress management. and much more.

U.S. Army: Doctrine and Training Publications, 8_Series_Collection (Medical): http://armypubs.army.mil/doctrine/8_Series_Collection_1.html

So, our information environment isn’t quite “there” yet, but you know, it is a lot better than it was ten years ago, and it is headed in the right direction.

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