ACES

You may think Matthew Holt is just some eccentric chap who fell into the world of health information technology and thought he would try it on for size.  Some may look at his raised questioning eyebrow, listen to his rather caustic statements and think that Matthew is just dabbling in this space until something else catches his fancy.

They would be wrong. 

Matthew hides so much behind a clever jest or turn of phrase. I have watched those blue eyes fill with worry rather than mirth.  Matthew cares very much about the future of health, and not just the sparkly tech- ‘I have an app for that’ side of health.  He makes a point of inviting patients to his Health 2.0 events.

I asked Matthew to join The Walking Gallery many times, but he always redirected explaining he did not own a jacket.  I continued to pester him, until he finally admitted,  “Well, I do own that one jacket, but it is red satin.  Will that work?”  I said yes, rather emphatically and then asked for his story.  Then Mathew told me he wanted to tell someone else’s story. 

Matthew and his family are financially secure; they could take their baby to any pediatrician in the San Francisco bay area.  But they go to the Bayview Child Health Center. They go to the poverty clinic and their child is seen by doctor Nadine Burke.  She is changing the practice of medicine one child at a time.

This is Matthew Holt’s Jacket “ACES.”

Life is a gamble they say.  Some win and some lose, but those that have the deck stacked against them are much more likely to lose.  Imagine we are are all playing poker, aces are high and it is five card hand.  The player holding 4 of a kind in aces plus the kicker (that random extra card), is very likely to win the hand.  In this jacket vinette I worry for the winning four of a kind. 

In this painting, children are arrayed around Dr. Nadine Burke.  Four of the children show playing cards in their hands; each child holds an ace.  The children look worriedly at their parents and the doctor as the she advises one parent.  These children combined with the parents represent the ACES: Adverse Childhood Experience Study.  This study was a joint research project between Kaiser Permanente and the CDC conducted between 1995-1997.  The baseline participants are still being tracked today.

The results of this study were astounding.  

Participants were asked if they had experienced adverse childhood events in their households. To the far left a man looks up as he prepares to ingest an anti-depressant medication. "Was a member of the family mentally ill or depressed?"

Beside this figure a large muscular man in an orange uniform and wearing handcuffs stares out at the viewer. “Was a family member imprisoned?”

Beside this man and to his right a woman with a bandaged arm and bruised eye is speaking with Nadine. “Was your mother treated violently?”

In front of the abused mother, another woman has collapsed upon the floor with a bottle of beer in hand. “Was a family member an alcoholic or drug user?”

Finally a tombstone completes the scene, “Was a parent absent due to separation, divorce or death?”

Participants who answered yes to four or more of these questions were at substantially higher risk for premature death and chronic health problems.  The research determined that children did not have to be subjected to direct physical abuse to suffer adverse effects in their health.  Just being in this hostile environment had a cumulative and toxic effect on the child’s DNA.  Of those studied with a four ACE’s it was found they were 260% more likely to suffer chronic pulmonary obstructive disease compared to a child with 0 ACE’s. 

So Nadine is incorporating this study into her care design.  She is treating each child with the knowledge that they are predisposed to suffer certain health conditions.  I sincerely hope those technology firms designing electronic health records learn from her work.  The electronic health record cannot be an episodic receipt of care; instead it must provide a view of a life in its entirety.  What happened yesterday has great impact upon today.

As an adult reading this study, I know I must communicate more with my doctor, as I am one of those lucky ones.  I hold four of a kind in this game.  When my youngest son Isaac saw the picture he wanted to be included. I did not want to do that. But he’s the kicker, for no matter how hard I tried to have him live a childhood better than my own, his father has died.

So Isaac holds hugs the tombstone. I know in this way the deck is stacked against him.

Thoughts on Tagging

On Thursday night I had the pleasure of attending Health 2.0 Stat.  It is the local Health 2.0 meeting hosted by Mike Tock and Aquilent in the upper room at the Barking Dog in Bethesda.  It is always great fun, and I was doubly happy to be there this time because I was speaking again. 

I followed several great presentations.   And they were filled with excellent explanations of data and technology and mobile applications.  Then I got up and began to speak about tagging.

Tagging

View more presentations from Regina Holliday

What does tagging mean to you?  To my five year old it is a game that is played on the playground.  To artists it can be the graffiti on the street.  If you tweet, it is a hash tag.  Or perhaps you are into tech and then we are talking metadata and QR codes.  But it is all about the tag.

Humans have been tagging for a really long time.  You can go to the caves of South America, and see tags.  You can look inside an ancient pyramid, into the smallest space that no one is ever supposed to see, and there will be tags.  Or you can go to the bricks of Babylon and will find them there.  The tag that helps all of humanity find you, and tells eternity you lived and breathed.

I started tagging on a wall when I was six.  I used chalk and sandstone.  Each day my tag washed away and I began anew. Sometimes the writing was a cry for help, a plead for change, or simply the statement:

“I was here.”

I recently spoke in Philadelphia at an ONC event, and as I left the hotel I came upon this door covered with tags.  It reminded me of Health 2.0.  Have you ever been to the health 2.0 site?  It looks very similar.  Logos, Sponsors and coming events cover the page.  How Health 2.0 has grown over the past few years reminded me of a quote from Shepard Fairey talking about street art:  “The more stickers that are out there the more important it seems.  The more important it seems the more people want to know what it is.  The more they ask they ask each other.  It gains real power from perceived power.”

I wondered how can an outsider artist, or an enterprising start-up, or a social media savvy doctor, send a message to us all? Well it is really simple: they can write it on a wall.

There are a couple of definitions of Health 2.0 one is from Matthew Holt aka @boltyboy: “Health 2.0 is just a term that groups together the healthcare use of Web 2.0, which is in itself just a term for easy (& cheap!) To create easy to use software that encompasses search, wikis, blogs, video, online communities, mash-ups…

Another comes from my good friend Dr. Ted Eytan: “Health 2.0 is participatory healthcare.  Enabled by information, software, and community that we collect or create, we the patients can be effective partners in our own healthcare, and we the people can participate in reshaping the health system itself.”  ~ Ted Eytan, MD @tedeytan

When I see the picture by street artist Banksy of the girl holding balloons, I think of our current care model.  You see this little girl in her dress floating so high, with only balloons to support her and you know they are going to pop and she will fall.

But we can create a patient, family community care model combined with the traditional chronic care model and support that by the tools and technologies of Health 2.0, empowered patients and a proactive care team.  That is how we get the balloons, the parachute and the net beneath.  That is how we save lives and improve quality.

I don’t know if you realize that at the same time Health 2.0 was becoming a movement so was street art.  It grew from a world of tagging and spray graffiti to and all encompassing form that welcomed all equally: knit-bombing and wheat paste, murals and stickers.  It welcomed a widow who created a painting called 73 cents.  That is I on Wooster Collective page back in 2009.  “Street art is the first global art movement to be fueled by the Web,” Sara and Marc Schiller of the Wooster Collective.  I am part of two movements fueled by the web: Health 2.0 and Street Art.

Imagine what can happen when a health data movement unites with a patient street art movement?  We can create a walking wall of change.

And you can be part of that.  On September 25^th 2011 will be a special day at Health 2.0 in San Francisco. It will be Patients 2.0 and the patient will be front and center. There will be a second gathering of The Walking Gallery throughout the conference from the 25^th through the 27th.  In addition, I will be working on a large mural piece where street art meets Health 2.0.  In that painting the old school will meet the new and the tools of technology will unite all. 

Each attendee will be invited to create a personal graffiti tag, because in the end, this story is about …you.

Health 2.0 meets Street Art & The Gallery Walks Again

It has been almost a month since the first gathering of The Walking Gallery.  I have been asked, “When shall we gather again?”  Many of us have been walking in the past month.  I wore my jacket in DC before CMS, in Nashville before Premier and in Orlando before Avatar’s Patient One.  I have seen pictures of Keith W. Boone, Whitney Zatzkin, David Hale, Ted Eytan, Maumi JC Chatterton, Mark Scrimshire and Christine Kraft wearing their jackets at conferences in this nation and abroad.  The gallery is indeed walking.  Recently I spoke to Matthew Holt, Indu Sabaiya and Lizzie Dunklee at Health 2.0 and they have agreed to host the Gallery on the evening of September 25^th after the Patient’s 2.0 session.  I am not surprised that Health 2.0 would support the idea of our little start-up, after all they have been doing that for a long time.

My first foray into the world of medical advocacy was during a “small” Health 2.0 meeting in May of 2009.  In that meeting, I learned that there are some amazing people working diligently to bridge the digital divide and help patients using the tools of technology.  And a little less than a year later I would meet Matthew Holt, a man who helped define the concept of Health 2.0.  In the spring, I would meet him at a small informal dinner in DC and would enjoy being part of the jovial conversation and listening to his lilting tone across the dinner table.  He was a gracious and kind host and made all feel welcome at the table.

Matthew soon asked me to be part of Health 2.0 Goes to Washington in June 2010.  I would be a presenting patient speaker and would take part in a panel discussion on Meaningful Use.  It was an amazing day.  I was overjoyed by the welcome given to those of us representing the patient community.  Health 2.0 staff treated patients with as much dignity and respect as they would to any CEO, tech start-up founder or governmental employee. 

The next event was the Fall Health 2.0 Conference in San Francisco.  On Wednesday October 6^th 2010, Health 2.0 held a special pre-conference event called Patients 2.0.  That day scores of attendees and patient speakers assembled and spoke about the role of the patient in the world of Health 2.0.  It was an amazing session, and as Health 2.0 organizers were very cognizant that most patient advocates are self-funded there was no fee for participation in the Patients 2.0 session.

This was also the second time I painted on site at a health conference.  Matthew was so supportive of my work painting in the back of the room, and he let me close the conference with a short speech and explanation of the painting.

So at Health 2.0 San Francisco Sept 25-27, 2011, in addition to a second assembly of The Walking Gallery, I shall be painting again.  And so will you.  This year Health 2.0 will meet the street art movement.  We are asking all attendees to create their own “tag” or sticker to be part of a mural piece painted on site.  This painting will be another bridging concept as it will include many of the “old masters” in the world of medicine as they meet their Health 2.0/street artist counter points. 

Why paint Health 2.0 folks as street artists?  As I explain in an upcoming article in Interactions:

“I don’t know if healthcare strategist Matthew Holt (www.matthewholt.net) and other Health 2.0 friends consider themselves “street,” but the Health 2.0 movement has much in common with the street art movement. The innovators in health data often sidestep traditional institutional hierarchies in their attempt to create better medical care. Using a loose organizational structure supported by the tools of social media, these innovative thinkers post their work in the comments sections of online patient communities as well as in insider publications within the medical field. Their “Code-a-thons” mimic in participation and intensity the energy of a well-attended flash mob. The frequent rise and fall of tech start-ups within the Health 2.0 community, while regrettable, reminds me of the ephemeral stencil art of the gritty street. Their very short-term existence creates and fuels a type of graffiti  “tag.”  The abandoned start-up’s websites and forgotten healthcare logos litter the web.  They are like “Obey” or “Borf” part of a meaningless urban chatter when viewed alone.  View all of those tags together and they can lead to a data access movement.”

I will paint this vision with your help during the entire event, and on the last day we will finish the painting as we finish the conference.  The last session will be a panel of patients and the stage shall fill with a Walking Wall of the Patient Voice.

So who shall join us this fall in San Francisco?  Who is ready to be part of a movement?

Because you know what I say, we are all patients in the end.