TEDMED Blog : Examined Lives: An MD on living and helping to guide the evolution of transgender health

I’ve done more than 10,000 surgeries and they had little emotional impact on me because I was shut down. There’s no emotional attachment. I know I did it; I earned a good living; I remember things people wrote and cakes people made for me, but there’s no attachment.  It’s only after I transitioned that everything has been more real and alive and colorful.  We do know that the memories that most vivid and are easiest to retrieve are those with the most emotional content to them, but you need to be receptive.

Wonderful interview of Dana Beyer, MD. Thanks, TEDMED (@TEDMED) team for listening – the best use of technology ever.

via TEDMED Blog | The future of health & medicine is here too.TEDMED Blog | The future of health & medicine is here too..

Don’t forget to catch the special Google + Hangout today at 2:00 pm – Great Challenges : Transgender Health : An Evolution to Understanding.

TEDMED

A lot happened in health last week, in many dimensions. TEDMED (@tedmed) was a part of it for me. I’m not going to try summarize (because I’ll miss A LOT) but I will add my experience (it’s my RSS feed, after all :)).

The hive

The Hive, brought to you by…

For the people and organizations who had a presence in the hive, you/they will know what it takes to create one. A lot of work. How do you distill (in our case) a 9.2 million, 180,000 member/staff strong health system into 500 square feet? You get Susan Terrill , Michelle Soohoo, Holly Potter (@htpotter), Keith Montgomery (@kmontgomeryndc), Diane Gage-Lofgren (@dianelofgren), and Dina Piccoli (@dinapiccoli) to lead you, of course.

Some of us not-so-secretly hoped that we would emerge with a pop-up version of the Kaiser Permanente Center for Total Health (@kptotalhealth) , and I think that happened.

Jess Jacobs (@jess_jacobs) lovingly referred to the experience as “Kaiser (Permanente) is so far past faxing orders that they’re into sustainable apples” (more on her later).

I would like to point out that our hive presence was staffed with three people who I would consider in a group that I call “descendants of Sidney Garfield, MD” – people who change things around them as they grow and develop in this health system. That group includes Preston Maring, MD (@prestonmaring), who has ignited a revolution in healthy eating and food procurement ( now at 16 percent of food sourced sustainably and growing ) , Sonia Soohoo, MD, who pioneered the use of gaming technology to save lives with “Dr. Hero”, and Joannie Grand, RN (@Joan_Grand). Joannie is  the Medical Center Administrator of Kaiser Permanente Capitol Hill, and if you see her in action you’ll know what it means to be dedicated to a population, in one of the most importantly located medical centers in our system.

The role of Jess and Amy

Harness the human spirit, Jess and Amy (View on Flickr)

I was part of the Great Challenges “Role of the Patient” Team. Jess Jacobs is a person just starting her life while on a very trying health odyssey. Amy Berman is a person just living her life while avoiding a trying health odyssey. It is an interesting juxtaposition.

During the week, Jess wrote this blog post (see: My Intravenous Lecture | Jess’ Juxtapositions ) that really challenged our thinking about what health care is supposed to be doing for people. Note the bottom image in the post, and then ask what health care is supposed to be doing for the environment around the people. Hint, not what it’s doing today.

And then there was Andrew Solomon

Andrew’s talk “How does an illness become an identity” was the most spoken about all week, at least to me :).

Regardless of the generation we grew up in, we have all lived through an era where name-your-group of people were reduced to illnesses or inhuman because they were misunderstood, or worse.

If you have ever seen or experienced dehumanization as Andrew (@Andrew_Solomon) describes, the antibodies you produce to it will create a level of determination to stop it when you see it again that will surprise and maybe overwhelm you.

This is the story of people with dwarfism, people with trisomy 21, people who are gay, lesbian, or bisexual, and in this era, people who are transgender.

The signature of this situation, people who are not only uncared for and invisible, and further, act as if they don’t deserve care, is unmistakable.

It’s why I have the reaction that I do when artist Regina Holliday (@ReginaHolliday) paints a person with a transgender symbol around them on our crazy life ride. It’s a sign that a vital, forgotten group of people will have an identity, the same feeling of importance that Andrew generated in his talk.

I wrote about something similar when I went to visit the team behind MiVia, a personal health record for seasonal farm workers in Northern California ( “Because Everyone Wants to Belong” – MiVia, a community’s personal health record system | Ted Eytan, MD) . Every human wants to belong, and they want to begin and live a productive life.

If a TEDMED stage and the art that comes from and around it can lead people to being human, that’s as powerful a producer of health as any I could think of!

I selected my favorite photos below, click to enlarge, curate your own by going to the whole collection: Collection: 2013 TEDMED – KPTCH. All are creative-commons licensed, download away.

Hey, thanks again to the entire TEDMED team including one of my favorite members, Whitney Zatzkin (@MsWz), my colleagues, TEDMED delegates and all the patients and people who will do great things because they’ll get to start living the lives they’ve dreamed of.

What did you learn? Comments welcome.

My Intravenous Lecture | Jess’ Juxtapositions

My Intravenous Lecture | Jess' Juxtapositions.

This is a blog post written by my community colleague Jess Jacobs (@Jess_Jacobs).

When I saw her at TEDMED and she told me about the patient experience around the diagnosis of here syncopal spells, I think I suggested she write a blog post. I’m not sure – I think I said that if these non-patient-centered approaches to care happen to everyone and no one says anything about them, they will continue.

So she wrote this blog post telling her story.

She did a beautiful job documenting things through photos ( one of my favorite things 🙂 ) and in her story shows the difference between “data” and “facts”. “Data” are things like “X% of hospitals are using electronic health records,” or “100% of the time, patients should be able to access their medical records.” “Facts” are what happens at that highest level of the health system, where the patient receives services.

Read Jess’ story to see if you can see the difference between data and facts. We’re bummed because the facts don’t match the data.

Who knows, maybe the system that created this experience will go on stage at TEDMED and tell the audience that if the patient they disappointed is out there that they’re sorry, too.

Thanks, Jess.

TEDMED Great Challenges Role of the Patient – Video of first Google Hangout

Nice thing about Google+ Hangouts on Air is that they automatically post to YouTube….

Here’s the video, it was a lot of fun, and it was only the second or third hangout that I’ve done. I figured out half way through to not speak so loud in to the mic, so apologies if you have to lower the volume to listen, experience is the best teacher :). Head over to the Great Challenges: Role of the Patient page and/or feel free to add comments here. Thanks for participating.

TEDMED 2013 Great Challenges: Role of the Patient – Your Turn

It’s time for answers that are not from me 🙂

I last posted about the TEDMED2013 Great Challenges: Role of the Patient in September (see: Role of the Patient is one of the TEDMED Great Challenges, Join us in posing questions now | Ted Eytan, MD), when I appealed to the community to ask questions.

Now is the time to make your mark, by answering 5 key questions that were developed based on the initial responses. Just go to the Great Challenges : Role of the Patient page, log in, choose a question, review team answers (or not), and add yours.

If you take a look at my reposes as part of the team, you’ll find that they’re really “response-lets,” with some gaps and mildly declarative statements. It’s what I do in social media, to create space and understanding that (a) I’m not that smart and my ideas are not that unique (b) we are always at our best when we are not bouncing a ball alone. The bouncing ball concept comes from Regina Holliday (@reginaholliday) with whom I am getting ready to present with at TEDxAlvaPark, in Detroit, Michigan, at the Henry Ford Innovation Institute (@henryfordideas).

If you weren’t sure about jumping in previously, I think this phase is easier to participate in – you don’t have to come up with new questions, just provide your experience. In looking at the responses so far, I would love to know more about who people are. Feel free to write about how you got to care about this issue, what you do now in service to it (or how it doesn’t serve you), so the team can connect with you. Sound good? Head over to TEDMED2013 Great Challenges : Role of the Patient.

Also I’d like to mention Kaiser Permanente colleague Jack Der-Sarkissian, MD (@DrJDS) also a family physician, who’s on the team for Addressing Whole-Patient Care. He’s an expert in the field of obesity and has a lot of experience in inter-specialty collaboration to improve the health of a population.

Role of the Patient is one of the TEDMED Great Challenges, Join us in posing questions now

I consider this to be the “decade of the patient,” which to me means patients will be more involved and more central to what we do in health care than ever. This includes not just access to the information in their medical records, but in the design and operation of the health system itself. Until the day comes when medical professionals always get it right, patient advocates would like to help out, fill in the gaps, save themselves, the people they love, and their society from unnecessary harm. And lots and lots of physicians are going to stand with them.

This statement, authored by me, shouldn’t be that surprising on this blog.

It’s my perspective statement on the TEDMED Great Challenge “The Role of the Patient” , which is one of 20 Great Challenges that the Robert Wood Johnson Foundation and TEDMED bringing to the level of a national dialogue as part of TEDMED (@tedmed).

This means that there’s an opportunity to broaden this discussion, in the space that shares my first name, virtually, and on site in Washington, DC, in 2013 (hooray, #epicenter).

As the Challenges web site says, we are not trying to solve problems, just trying to bring in more views:

The mission of TEDMED’s Great Challenges Program is not to solve these complex problems. Instead, we propose to provide America and the world with an unbiased and broadly inclusive view of these challenges, incorporating thoughtful, multidisciplinary perspectives. We seek thoughtful views from doctors, scientists and researchers, of course — but also from technology innovators, business and government leaders, patients, legal experts, representatives of the armed forces, the media, and many more.

During this phase, and until October 1, questions and dialogue are requested – from the general, and I would say to the specific, about the role of the patient. I would especially like to see health professionals and health professionals-in-training participate. What are you learning about the role of the patient in your environment, is a healthy role being taught/reinforced, or is an unhealthy one being taught?

What you need to do is log in to the Great Challenges site at TEDMED.com , and go to the discussion area for The Role of the Patient Great Challenge (direct link). Please pose a question, or two, like a few that you like, add some information or a story in the discussion area below.

The idea here is that more than just a blog here or there can be involved in the discussion. Like so many other things in health and society we want to do better in, it’s time.