Tag Archives: healthcare

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

Since Katrina, Part One: #SinceKatrina, #Katrina10, #Katrina10Years

Katrina Memorial

It’s been 10 years since Hurricane Katrina. Hurricane Katrina changed my life, in many ways. I want to talk about health information challenges then and now, how the information landscape has changed, but that will come in Part Two. For today’s post, I want to honor many of the other voices and conversations around this anniversary. The hashtags collecting these are:

#Katrina
#Katrina10
#Katrina10Years
#SinceKatrina

People are telling the stories of what happened then, remembering, grieving, sharing anger and hurt that has barely faded. Others are analyzing again what went wrong. A few are celebrating survival and growth. Many are looking to the lessons learned and what must happen to prevent this happening again. There are many worthy stories, opinions, ideas, and ideals here. I’ve selected just a few.

STORYTELLING: THEN & NOW | HEALTH & MEDICAL | HISTORY, MUSEUMS, EDUCATION, & LIBRARIES | RESILIENCE, LOSSES, & LESSONS LEARNED | PROGRESS & NEW TOOLS

STORYTELLING: THEN & NOW

HEALTH & MEDICAL

HISTORY, MUSEUMS, EDUCATION, & LIBRARIES

RESILIENCE, LOSSES, & LESSONS LEARNED

PROGRESS & NEW TOOLS

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Big Beautiful Questions (A HOTW post from #hcldr)

Guy with questions 8

The other blog for which I was writing the “Hashtag of the Week (HOTW)” posts has changed focus, so I am no longer doing them weekly, but I am still doing them when available time and something amazing both intersect. The something amazing part happens ALL THE TIME, and if that was the only factor, I could do these daily! But this time, the conversation was so relevant and useful that I would feel like I wasn’t doing my job if I didn’t share it.

Yesterday evening, the Healthcare Leadership group had a conversation about the role of questions and questioning in healthcare. The conversation was lead by Bernadette Keefe, MD, and was triggered by Warren Berger’s work in the area of “beautiful questions.” He wrote a book, but you can find a short intro to the core ideas in his New Year’s article, “Forget Resolutions.” To help people ask better questions, more answerable questions, questions that have a higher potential for leading to positive change in their life, Bernadette pointed out the tips from the “Right Question Institute“, and I pointed out the “Question Prompts List” strategy.

Right Question Institute Question Prompt Lists

The real value of the #hcldr conversation, however, came from the questions. The questions posed for the group, and the questions posted as answers. My favorite of the questions posed was, “What are we not asking?” Keep that in mind as you read the following selections from the questions given as answers to the prompts.


T1 In our sizable efforts to make healthcare more efficient, accurate and safe,as well as less costly, what are the questions weʼre not asking?


T2 As you experience healthcare delivery today – is questioning valued?


T3 What are questions you, personally, would like to ask of your healthcare provider, medical insurance company, or hospital?


T4 How could the value of questioning be incorporated into healthcare delivery in an efficient and effective way? Programs etc?


Closing Thoughts

Aligning Forces for Quality (#AF4Q #hcvalue) – Hashtags of the Week (HOTW): (Week of December 15, 2014)

I came back from the Aligning Forces for Quality (#AF4Q) conference last month, all excited and wanting to assemble this post right away. Now, weeks later, and life happened but the blogpost didn’t, to my disappointment. Hopefully the wait will turn out to be worth it, as I’ve been mentally percolating what I heard and learned while there. Here’s my plan. First, begin with highlights from the Twitter stream. Next, choose a few of the Youtube videos from the event to highlight or react to particular concepts. Then, if I have time (which is unlikely), I’d like to do a recap / overview piece. What is more likely to happen is that ideas and concepts and strategies I heard at AF4Q will continue to inform other work I do, and will be shared in those contexts as they arise.

What is Aligning Forces for Quality? When I was invited to attend, that was my second question. The first question was, “Is this legit?” I had somehow not heard about AF4Q previously, and so I wondered who are these people, why are they inviting me, and what is this about? The AF4Q project turns out to be one of the many healthcare projects funded by the Robert Wood Johnson Foundation. That answers the question of legitimacy rather nicely, I thought! This particular project has been a several year initiative to explicitly attempt to revolutionize the practice of healthcare through inclusion of and engagement with patients.

Really? I mean, we talk about this ALL THE TIME in the many healthcare Twitter chats, the Mayo Clinic Center for Social Media, the Make Health movement, various local initiatives at UMHS…. I mean, REALLY??? How has this been going on for years, and me watching for patient engagement topics, and still I didn’t know about it? It turns out, that was part of why I was invited. They are doing this extremely interesting work, but it isn’t widely known. The solution? Invite some strong social media voices to the event, and give them free rein to observe, engage, and respond to what’s going on around them. Smart.

Yes, that’s me at the far end of the picture, behind Alicia Stales (Chief Patient Officer of Akari Health), Susannah Fox (until recently Associate Director, Editorial, of the Pew Research Center’s Internet Project, but now Entrepreneur in Residence at @RWJF), and Pat Mastors (President and Co-Founder of the Patient Voice Institute). Thank you so much to Alicia Aebersold (Senior Vice President at the National Council for Behavioral Health) for the photo. Really, she should have been in the photo, not just taking it! Hard for me to believe I was there, rubbing shoulders with all the glorious people. There were a lot more who aren’t in this photo. I am tempted to start listing names, but if I did I’d leave out someone wonderful.

The AF4Q organizers did a strong job of incorporating social media into the event. They used two official hashtags: #AF4Q for the overall project and organization, #hcvalue for this specific event. These were posted prominently in every room, at the registration desk, and on the banners decorating the meeting space. I complicated matters by adding in custom tags for specific break out sessions, so that I could later distill and collate tweets from specific sub-events. This was pretty easy to do, as the breakout sessions were all numbered, so I’d just add the session number to the end of the shortest tag, like #AF4Q7. In addition to the hashtags, they also had staff assigned to each room and presentation, to make sure that there were official folk tweeting in addition to the invited voices and the attendees. I found it a little confusing that all the official staff tweeting were tweeting using the same account, but from different rooms and different sessions, without any indication of which room they were in or who was tweeting at a particular point. I recommended adding session tags, and the use of initials to distinguish separate voices in the shared account.

With that background, I think it’s time to look at some of the tweets, with the focus being on great ideas, thoughts, and resources shared. (There were selfies galore, but you can find those on your own, if you want the faces to go with the names.)

IDEAS & THOUGHTS

RESOURCES

CLOSING CONCEPTS

AFTERWARDS

Risky Hashtags (#OzsInbox) – Hashtags of the Week (HOTW): (Week of November 17, 2014)

Social Media Gone Wrong
Social Media Gone Wrong: http://www.pinterest.com/rosefirerising/social-media-gone-wrong/

Recently, there seems to be a rash of examples of social media gone wrong. Last weekend, it was the Facebook post by a GOP communications staffer criticizing the way President Obama’s children dress.

The weekend before that it was Bill Cosby’s new meme generator, which was promptly used by the public to comment on his presumed sexual practices.

Before that, it was Dr. Oz’s request for health questions he could discuss on the show. That didn’t go so well, either.

There are several more examples along these lines, many including hashtags that have been misappropriated by the audience. Evidently the audiences weren’t quite what was expected by the companies creating the hashtags for their marketing campaigns. The Cosby example was one of those, with #CosbyMeme. The Dr. Oz example is another. He used the hashtag #ozsinbox. Some folk read it as #OzsInbox, but others read it as #OzSinBox. Oops.

Since the HOTW series focuses on hashtags, I thought it would be appropriate to spend a little bit of time talking about how hashtags can go astray. At the same time, I don’t want to scare people away from using Twitter, so there will be a “part two” that talks more about how to use and choose Twitter hashtags to support your real goal. It does take a little advance thought and preparation, but done well, hashtags can be an amazingly powerful and useful way to get your message out and engage with people who are also passionate about it.

For now, just a few tips and thoughts about what happened with Dr. Oz.

TIP ONE: Do you REALLY want to do a Q&A?

The CDC routinely does Twitter chats with Q&As on emerging health topics. They did one recently on Ebola, for example. This is obviously a good thing, and a great way to let people say what worries them and then respond directly from experts with high quality authoritative health information. Don’t give up entirely on Q&As just because of this. But consider, there is a pattern of high profile people offering to do a Q&A and being targeted by those who don’t like them, who then take over the stream. I’ve done Twitter live interviews, but I’m not actually important or famous on the scale of either the CDC or Dr. Oz. So, before you offer to do a Q&A, think about reputation, context, and if you just want attention or actually have something of value to contribute. If you just want attention, are you alright with it not being good attention? Because that sometimes happens. People will tell you exactly what they really think of you, if that’s what you want.

TIP TWO: If doing a Q&A, try to imagine the kinds of questions you might get. Then ask a few friends. Then ask a few enemies. Then ask a half dozen teen age boys.

TIP THREE: Brainstorm alternate spellings & interpretations of the chosen hashtag

TIP FOUR: Are you OK with humor? How will you respond to folk joking around?

TIP FIVE: Consider your partners & employers. How does what you say & do reflect on them?

TIP SIX: What should you do if it all goes cockeyed?

This.

THOUGHT ONE: Reputation & Professionalism

There are a lot of doctors who gleefully tromped all over Dr. Oz, given this opportunity to do so. That set a kind of example. There were a few people who tried to say that they knew Dr. Oz before he was a media star, and that deep down there is a good doctor somewhere under all the hype. Those people were placing themselves at risk if they tried to defend him. Some media sources described the frenzy around the hashtag as being dominated by trolls.

Even if you completely believe that Dr. Oz is a horrible person who has lost his way in the maze of popular pseudoscience, if you entertain yourself by trashing him in a situation like this, how does that make YOU look? Is that the person you want to be? How does this make the profession appear? When doctors get snarky, does healthcare get a pie in the eye? It sets an example for the public when doctors trash each other. That might be a good thing, or it might not. I’m not sure yet. And remember, what you say can be misunderstood just as badly as anything said by anyone.

Dr. Pav Khaira has a background image on his page saying, “This is my simple religion. There is no need for temples; no need for complicated philosophy. Our own brain, our own heart is our temple; the philosophy is kindness.” Obviously, he has a good heart, and means well, but is also willing to poke fun with the best of them.

Who is Dr. Nick?

Dr. Sunil K Sahai was fairly new to Twitter when this came up. He came to regret what was intended as a funny tweet, and blogged about what he should have said instead, and how.

Dr. Jen Gunter became something of a folk hero among the Twitter healthcare community for this cogent post, and a few others.

More health care folk and what they think about Dr. Oz.

Doctors In Oz

OTHER TWEETS

CLOSING THOUGHTS

Want more? Here are the statistics, metrics, and more tweets.

#OzsInBox Begins