Making Health Care Measurement Patient-Centered: Convening to Develop Principles and Strategies

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2016.09.30 Making Health Care Measurement Patient-Centered 08234 With @DrNic1 @kymlmartin @Lygeia (View on Flickr.com)

As the title says, I attended this convening, “Making Health Care Measurement Patient-Centered: A Convening to Develop Principles and Strategies,” which you can review in more detail on Twitter (#PtCenteredMeasures) – one of the joys of this movement compared to others is the regular use of social media compared to others (*cough* environmental stewardship movement) – they’ll all get there with our help.

As I said in another post, many parts of these get togethers are really a proxy for respecting humans in health and health care. That’s good news because everything that’s being discussed by this group has applicability everywhere, from measures in health care to equity in health.

This is because equity comes from the ability to control one’s own destiny, and that means being able to participate and advocate in a group’s best interest. And what better group is there to advocate for than humans. As part of the walking gallery of health care 🙂 .

The Walking Gallery at 5 years

June 7, 2011

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TheWalkingGallery 2177 (View on Flickr.com)
June 15, 2016

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2016.06.15 Better Together Health with Council of Accountable Physician Practices 00564 (View on Flickr.com)
1 artist in 2011, 43 in 2016. A few jackets in 2011 (My first is #11), over 400 in 2016.

It’s been exactly 5 years since Regina Holliday (@ReginaHolliday) conceived the first one, and a most important milestone passed (for me) : Regina actually painting inside the Kaiser Permanente Center for Total Health (@KPTotalHealth).

Organizations and cultures change. So do people – the statement (among many) that most impressed me in 2016 was when Regina told me that her painting has gotten much better since 2011. I was wondering how that could be, but on reflection, so has my photography. People get better with time, too.

One thing that hasn’t changed was what a complete stranger said to me in the elevator – “I wanna see the back of your jacket.” – be my guest. 

Unfortunately, Regina has really mellowed out, she’s lost her passion – just kidding!

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I got to see her again in her role as panelist along with several other passionate leaders at Better Together Health, hosted by the Council of Accountable Physician Practices. I was assigned as her personal host, which she quipped was really the role of “managing the activist.” But really who’s managing who 🙂 . For the handful of humans that I know that are like Regina, on a mission, my simple advice always holds true – just don’t say no to her. And why would we want to anyway, I like this crazy life ride.

Thanks to CAPP (@AccountableDocs) for saying yes to Regina, and to the patient, the person we are here for.

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If you want to flash back to 2011, be my guest. If you want to flash forward to 2016, you can do the same.

There are lots of cool moments in our relationship that are scattered all over this blog, feel free to surf around as well.

Re: My Walking Jackets – Couple of Asks from Regina Holliday

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National Diversity and Inclusion 33740 (View on Flickr.com)

I hope you see you again soon. Meanwhile,

1. Do you have a story you want to share about any actions or changes that resulted from you wearing your Walking Gallery jacket in public?

2. I am creating Pinterest board to make our stories easier to find, so I will be linking your blog posts about your jackets there…

Tons.

When I look back at my almost 5 years of being part of the Walking Gallery (I have two jackets, you can read about them here: My Walking Gallery Jackets, #147 (2012) and #11 (2011)) I realize that I wear them to empower others, and empower myself when needed.

The photograph at the top of this post was taken on November 22, 2013 on a day I needed a little extra courage, because I was going to introduce a room full of colleagues to people that medicine has had difficulty learning about and caring for. I took a deep breath, put on the jacket, and let the people tell their own stories, which they did beautifully.

In 2015, I wore my jacket as the first man (barely) at 2015’s XXinHealth (see: And I was the man (barely): XX in Health 2015).

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XX in Health 2015 53175 (View on Flickr.com)

When Robin Strongin (@disruptivewomen) asked me to explain what the jacket meant to the women there, I hurriedly captured this snapshot of the jacket and my story to explain it to the audience. One thing I have learned – when wearing the jacket, have the story handy, you will be asked to share it.

I guess, then, the actions and changes happen when I’m wearing the jacket – I reinforce to myself and the people around me who I am and the people/ideals I am doing things for.

If I forget, I’m reminded by a co-worker, a friend, a stranger, who tap me on the shoulder while I’m wearing the jacket. Each tap is a reminder that as much as we think people aren’t engaged (in health, life, the world around them), they are, in the kindest way.

I generate at least one, if not several referrals to Regina from every “wear event.” And I see that Robin herself just recently received her very own jacket 🙂 . The Walking Gallery is a very contagious innovation.

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EBW Partners 17790 (View on Flickr.com)

I once got to show the namesake of my first jacket, Regina Benjamin, MD, the jacket itself, which was exciting.

The jackets have also introduced me to a wonderful community of people who believe everything is possible, because it is. I willingly signed up in 2012 for jacket #2 (to me, #147 to The Walking Gallery) knowing that it would be the story of me versus the story of someone else. I was ready then, and I’m ready now, to bring all of myself to to the times where it’s helpful to show that people matter and the human spirit is limitless.

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2012 American Hospital Association Meeting and Jacket Presentation 11907 (View on Flickr.com)

Such a magical thing that some fabric, paint, and a brilliant artist can make happen…

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Philadelphia and Mid-Atlantic Bio Informatics 23107 (View on Flickr.com)

I wore my story too. #diversity #inclusion

A post shared by Ted Eytan (@tedeytan) on

Learning about high impact leadership in Washington, DC: Ruby Corado and Regina Holliday in national media

As I prepare to head back for my final session of the Kaiser Permanente Executive Leadership Program at the Harvard School of Business (@HBSExecEd), I am paying extra attention to examples of great leadership. Especially those of leaders who have the highest impact with the most minimal resources – that’s special to me (and many other humans).

Regina Holliday (@ReginaHolliday) is featured in USAToday (@USAToday) in this piece: Patient advocate fights for access to digital records through her art

Ruby Corado (@CasaRubyDC) is featured on the PBS NewsHour: LGBT youth home welcomes population accustomed to insecurity, Video at Giving transgender youth a safe haven from the streets

As well as on NPR: Casa Ruby Is A ‘Chosen Family’ For Trans People Who Need A Home : NPR

First of all, wow. They both are achieving national recognition for their work, in the same week.

I’ve known regina for 6 years, Ruby for 2, and from watching them lead, I think this has been inevitable.

There are so many similarities in their leadership. Their impact is far far greater than a person in society is supposed to have, much less a person in society representing a vulnerable population (in Regina’s case, patients in health care, in Ruby’s case, the LGBTQ community).

Regina’s leadership was shaped by the hospice (and hospital) experience of her husband Fred, where there was little love for coordination of care or provision of information to patients and families.

Ruby’s leadership was also shaped by work in a hospice, where as she says, “all they had to give was love.” Ruby worked at the Gift of Peace charitable residence, in Washington, DC operated by the Missionaries of Charity, founded by Mother Teresa. Gift of Peace was protested against by its neighbors because they believed at the time that HIV could be spread through the air. (See: Photo Friday: Our generation is changing everything for people who are LGB and Transgender | Ted Eytan, MD for more of the story)

Ruby told us before she opened the LGBT Youth and Adult houses in Washington, DC that she was going to be successful because “I get stuff done.” And she did. Prior to her work, LGBTQ youth who were not accepted by their families/society had to be homeless in Washington, DC, as they were either rejected by or harassed in shelters.

Regina told us that she will not stop until every patient has the ability to see their own health information, and she’s not going to, 330 walking jackets later.

I have noticed that they are both on a mission, but in a way that is inclusive of everyone. They can engage in a conversation of one or a room of 1,000. They can command the attention of a community, and as we’ve seen this week, a nation. You can’t say no to either of them (or at least you shouldn’t), and at the same time, they are inclusive, kind, and open. When they write about their victories, they generate excitement, about their frustrations, they generate sympathy. How do they do it? It’s really worth listening to their stories and learning more – see for yourself.

Oh, and they both happen to be women.

There may be something to this kind of leadership that draws so many people to it. I was able to watch Ruby receive a community-wide honor for her work at the Thurgood Marshall Center in Washington, DC last week. I’ll post on that separately, but that’s a place where leaders also walked out onto a street and into a community that didn’t accept them, and look what they accomplished.

There’s one thing I don’t agree with in the NPR story about Ruby which is this opening statement, and the USA Today opener about Regina also makes me scratch my head a little:

This story is part of an occasional series about individuals who don’t have much money or power but do have a big impact on their communities. (NPR)

Despite her grief and background, Holliday has emerged as a colorful patient advocate with a command of electronic health record rules to rival any button-downed lobbyist. (USAToday)

I think Ruby and Regina have immense power beyond financial resources and colorfulness, and of the kind that society wants leaders to have and express. Like I said, much to learn.

I came to Washington, DC hoping to learn from the most transformational leaders of our time, in the most diverse places, where people believe everything is possible, because it is. As Ruby says, dreams do come true 🙂 .

Walking Gallery IV: #Artscape2014 Baltimore, MD, USA

I’ve never missed a yearly Walking Gallery of Healthcare event, now in its fourth year, phew!

This year’s was especially cool because it was sponsored by Kaiser Permanente Mid-Atlantic States (@KPMidAtlantic) at Baltimore, MD’s Artscape 2014 (see: Regina Holliday’s Medical Advocacy Blog: The Walking Gallery at #Artscape2014). This kind of support may seem like the obviously cool thing to do in 2014, however, I remember the days when people asked me, “how did you meet this Regina Holliday person again?” and the reaction being a mix of surprise and impressed-ness when the answer wasn’t “at a medical meeting somewhere.”

Now I am joined by doctors and nurses (and their children) in walking. Witness Michael Dias, MD, Permanente surgeon and Baltimore Physician in Chief for Kaiser Permanente Mid-Atlantic States (@KPMidAtlantic), whose daughter Olivia painted a beautiful jacket with her health story.

Since last year, the event itself is smaller, but the movement is not.

There is as much interest in my walking jacket(s) today when I wear them as there was when I first got them. People who see me remember my jacket from the last time they saw me, sometimes a year before. They are still among my most prized possessions – the other funny quote I remember from way back when was when someone said something to the effect of, “so you lost a jacket in this whole painting business,” and I was thinking, “I actually gained my best jacket in this painting business.” You can read about my jackets here.

I wore my jacket when I gave this talk just a few months ago: Presentation: Being a Transgender Ally and Unconscious Bias | Ted Eytan, MD. This demonstrates to me that the work to involve and respect the people we serve keeps changing and is at the same time ever-present. It will never go away, and that’s fine with me. What else are we here for in health care 🙂 .

I get to partner with my colleague Carol Cain, PhD (@ccain) to give a guest lecture at the Stanford University Division of Bioinformatics next week (Stanford University Biomedical Informatics 207), and in putting that together, have been looking for examples where HIT improves health for people, communities, and society. I was reminded in Baltimore about the need for Health IT to improve health and health care not just by lowering blood pressure and cholesterol, but by lowering anxiety, fear, information divides between physician/health system and patient/society. What else are we here for in health information technology 🙂 .

#TheWalkingGallery : Stories in Video

These are the stories of The Walking Gallery, painted by Regina Holliday (@ReginaHolliday), told in 11 second segments. Pick your story.

Have you ever felt like you are in the right moment, in the right place, in the right part of history? This was like that, albeit with a little bit of terror, as I uploaded each video in real time, and it mostly worked. Life is one big prototype here in our nation’s capital.

Twitter handles of our storytellers (please add yours in the comments if I wasn’t inclusive): @fredtrotter , @tedeytan , @motorcycleguy , @Lygeia , Isaac Holliday , @kymlmartin , @RossMartin , @2HealthGuru , @BenMarion1 , @HealthcareWen , @jess_jacobs , @drnic1 , Courtney , Joan Holliday , @joshcrubin , @kcmackrn , @gilmerhealthlaw , @kaitbr , @kaitbr , @ctorgan , @goodmanwood , @MsWz , @EnBloomMedia , @lindseybh , @iowastater , @ryukirby , @thepatientsside , @kenonhit , @susanchull , Jon , @reginaholliday , @susannahfox , Everyone , @craiglipset , @claudiawilliams , Moira , @ReginaHolliday , Everyone