Be Opened

I have a favorite word.  I heard it in a sermon over 20 years ago.  I even used this word as the title of my dear friend Kait B. Roe’s Walking Gallery jacket.

The word is Ephphatha. 

This is word that Jesus used as he healed a man who was deaf and mute.  The word means, “Be opened.”  Immediately upon being healed the man who once suffered greatly in his ability to communicate, began to exclaim and the crowd responded in kind.

This past week was a great one for the word Ephphatha, as the results of the OpenNotes project (primarily funded by the Robert Woods Johnson Foundation Pioneer Portfolio) was published in the October issue of the Annuals of Internal Medicine.

It was a great week for patients too.   I have been testifying these past 3 years about the importance of open data access for patients.  Much has been done to improve electronic medical record access in these past three years.  Meaningful Use stage one  specified that patients should be able to see imaging results, labs, vitals and after-discharge summaries.  The Blue Button download, currently in use by the VA, Medicare and Tricare, also enabled access to this information and a bit more.

But I testify that patients need complete data access and that means we should be able to see medical reconciliation reports, nurse’s progress notes and doctor’s progress notes.  I have said so vehemently and frequently in person and online.

I especially commented on the concept of open notes Twitter.

In June of 2010, I was part of a conversation thread on this topic.  While I was tweeting advocacy for complete access Steve Downs with RWJF joined the thread and told us to watch for the results of the OpenNotes project.  I learned about this project designed to study the ramifications of opening up doctor’s progress notes to patients.  I read about it a great deal in the two years hence.

I am glad to see the claims made by myself and other e-patients that open notes have great value now have scientific support.  In 2010, when we were advocating for open access we were given many reasons for denial. 

Reasons for record access denial vs. reality

We were told patients are not educated enough to understand medical language and would be emotionally damaged by reading the record, yet in the study 90% patients responded they understood what they had read and were not bothered by it.

We were told that if patients could read the record they would pursue more lawsuits against doctors; as of this writing I understand only 1-8% were concerned or offended by the contents of the notes and I have not heard of any report of legal action against the doctors in this study.

We were told patients are too lazy to check their record, yet 87% of those enrolled in this study did check the notes.

We were told that open notes would cause an unbearable increase in the workload for doctors, yet after completing the study doctors said the study either only added a modest increase in work or that it was negligible.

So post study we see so many fears were unfounded, and healing benefits came to light instead.  80% Patients claimed greater adherence to medication protocols due to access to the notes as well as better ability to follow their doctor’s recommendations. 

Which brings me back to Ephphatha.

Be opened.

There is more within this report than dry statistical support of the belief that open communication can improve workflow and outcomes.  This is the moment when the walls of isolation fall down and those patients and caregivers who cried in silence, both deaf and mute, can finally join in greater communion within healthcare.

Here our hearts open and we sing.

There is still much to discuss on this topic.  When will we see access to nurse’s notes?  When will individuals who suffer in the behavioral health system have such access?  When will those patients who have succumbed to drug abuse have access?  Will we find that the reasons for denying such persons access to be as unfounded as the reasons that were once used to deny traditional patients access to notes?

In DC on Thursday, October 11^th 9:30- 11:30 there will be a public meeting on OpenNotes that will be live-streamed. I hope to see some of you there as we rejoice and question.  I will be live painting and I think that painting will be entitled “Ephphatha Revisited.”

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Great articles on this topic:

Historic Day in Opening Doctor's Notes by Dave Chase, Forbes

Letting Patients Read the Doctor’s Notes by Pauline W. Chen, M.D., The New York Times

Would You Want to See Everything Your Doctor Writes About You? by Lindsey Abrams, The Atlantic

#OccupyHealthcare

Tuesday September 20, 2011 I met Ben Miller at the annual AHRQ meeting near Washington, DC.  You might know him as @Miller7 on twitter and his social media voice is loud and powerful. I have followed his wisdom for years, but on September 20th I had a chance to meet him in person.  He is a kinetic flame caught within a human form.  His slight body moves through the crowd like raindrops on a windowpane.  He is quick, unpredictable and oh, so very graceful.

He was wearing a three-piece suit and I offered to paint his jacket then and there.  He cocked his head to the side and smiled with an impish grin replying, “My wife would kill me if you did that.  This is my good suit.”  Not wishing to create martial discord I offered to paint another suit as soon as he could send one.  Then Ben invited me to attend his Mental Health Town Hall meeting the next day and I would paint the session.

I came to Ben’s session with my French Box Easel in hand prepared to weave through crowds in order to set up in the back of the room.  I was dismayed to arrive and find a room designed to seat 300 with about 50 attendees.  The room next door with its presentation about Partnership for Patients was filled to capacity.  Was there so much stigma attached to mental health that even attending our session was verboten?  I furiously began to paint. 

I painted the jacket The Stream during that session.  I spoke to Ben afterwards saying I would like to help him in anyway I could, and especially would like to spread the word on what he was trying to accomplish in the world of mental health and patient access to data and health records.  

Not long after he contacted me about his new twitter initiative and blog: #OccupyHealthcare inspired in part by the #Occupy movement on Wall Street.   Quite a few outspoken patients and providers had been saying some rather revolutionary things for quite a while now.  We would tag them #hcsm or #ptsafety, but now we had a new tag #OccupyHealthcare.  Ben created a site that would gather our words and magnify them and in the months hence he has taken on a lot of issues.

So this is Ben’s jacket: #OccupyHealthcare.  In this painting the ivory tower is personified.  Three careers stand tall before us.  A primary care doctor, a surgeon and an academic loom large within the composition.  They barely see the little people arrayed before them.  Their eyes seem disconnected and distracted; the surgeon cannot even stop from checking her smartphone in this moment.  Her eyes dart to the side as the small crowd forms beneath her.

The crowd consists of patients and providers waving banners that say things like: “ #Occupy Healthcare” and “Join Us!” with a twitter bird emblazoned on the sign.  All those in the crowd face the monolithic ones and we cannot see their faces.  But even with this limited ability to read intent, the viewer can see that is crowd is not angry.  This is a crowd of collaboration.  These arms are raised in welcome, not attack.  They are occupying the space.  They may be small and slight but they are many.  If you think small and slight cannot wreak havoc on old forms, ask any homeowner their feelings on termites.

Nature is designed in such a way that which is old and dead will be recycled into something new.  This can happen gradually through rot, mold and small creatures working diligently to deconstruct.  Or destruction can come in a wildfire of change, but even then nothing is wasted.  Cinders make great fertilizer and they are a key element in cinder blocks.

I am so happy Ben joined the gallery.  He is one of 148 Walkers that scurry to and fro from medical conference to medical conference.   At HDI in Washington DC on June 5-6, 2012, quite a few people were amazed how many jackets were at the conference.  One attendee said, “I used to only see a couple of these jacket paintings at a conference, and now they are everywhere I look.”

You see we paint on business jackets for a reason, they a type of Trojan horse.  A walker is invited to a conference.  He or she looks normal from the front.  They are allowed in and only then does it become apparent that the patient is in the room and the dialog must now change.

The Walking Gallery is a very simple concept; we are occupying Healthcare.

The Stream

On Tuesday I had the opportunity to speak at AHRQ for the first time. Their annual conference was held once again in The Marriott conference center near the White Flint Metro Station in Rockville. I realized I had been there once before. This was not the confused deja vi of a weary conference traveler, I seen Ted Eytan speak here a year before.

The Marriott had a sort of creepy sleepy stillness about it. It did not help in the least that I had just watched the most recent episode of Doctor Who: The God Complex. That episode was set in a hotel decorated with the same type of eighties opulence as this Marriott. Within that episode, each room contained a personal horror designed to break the faith of each unexpected guest.

In this hotel, attendees walked by leisurely as they chose which presentation to attend from the multitude of those offered. They opened doors, they walked within and disappeared. I paused, glancing at the different signs looking for my room. Whilst wondering if little Miss A should enter track B, Jon White found me. Jon works for AHRQ and had invited me to take part in his panel. Cell phone in hand, he gestured his awareness that I was present and then rushed away. His team member Heather soon appeared and began guiding me to the presentation room.

En route we ran into Ben Miller, also known on twitter as @Miller7. It was so exciting to meet such a great social media voice in real life. His physical person is as slight and lively as his twitter voice. I offered to paint his jacket immediately, but as it was a full matching suit with vest he declined in favor of continued marital accord.

I really enjoyed presenting with my panel. We had a nice size crowd in a small room. Though we presented at 3:30 in the afternoon, I did not see the tale-tell head jerk of the the seated sleeper. Ron D Hays and Keith McInnes had such amazing information to present about CAHPS questions relating to HIT questions. It was an honor to follow their thoughtful presentations. As the session ended, Ben asked me to come back the next day to attend the 3.5 hour town hall on mental health.

I said I would attend, and I would paint.



After bundling both of my children off to school, I lumbered, French box easel in hand, back to the Marriott. I had been assured that there would be space for me even if it were standing room only. I quietly let myself into a room as large as a grand hall. 300 seats were arranged before a the stage. A selection of speakers including Dave DeBronkart sat upon the dais A film crew was filming every moment as the event was being live-streamed.

There were only 49 attendees seated in the audience.

I was dismayed. As set up my easel dismay turned to anger. I felt as though I should check my vision and compare my expectations. I quietly removed myself and peeked into the next great hall. Here the room was full. I walked away and reentered our room. The empty one, the room whose empty chairs gaped like the holes within a lotus pod. Furiously I began to paint.

This is Katerina's Jacket: The Stream.


I can assure you that if Katerina Jackson-Suchkova had been in charge of that session every seat would have been filled. Katerina works for Lifetime Health Diary. It is a PHR company that contains and aggregates years of personal health data and uses a personal visual health construct on each users landing page. I love it, it actually has a picture of health.

I got to know Katerina when she organized a round table on health in DC. She was brilliant and had such an organized mind. She put together an excellent panel that day.

But this was another day, at other panel and I was painting eyes. The back of Katerina's jacket is littered with eyes. They fold blue within blue, the swirling tones of facebook and twitter look upon the viewer; for this is the stream. These are eyes of the countless viewers who watch the stage while far away in some other room.



Below a sky of eyes, the green grass is a horizontal capsule. How can we talk of mental health without bringing up the subject of drugs? Sprouting from the capsule are four silos. Each silo contains a figure garbed in a short and straining patient gown, trying desperately to escape.



In the center stands the epitome of fright: the Scream figure by Edvard Munch. He yells at the viewer while wearing vestments arrayed upon his gown of black. The vestments are embroidered with scientific symbol for male and female. He is speaking to all of us while he preaches to the choir.



Below the frightened figure, the choir raises their hands in concerned praise. They agree whole heartedly that we need to have more transparency in mental health between patients, providers and communities. But the choir is so very small.

Finally the saddest part, the part that makes this Katerina's jacket. A doctor on the dais recounted a tale of a young lady who took her own life. "She seemed so happy" he said. But then they read her diary. They read her words of all consuming anguish stemming from her infertility.



If only they could have read her diary before it was to late.

Do you see the life-saving beauty of an online health diary? As a widow who has data-mined a year of her own late husband's Facebook status lines, I can attest that the words we write are powerful things. They are powerful for the individual and for the aggregate. They show us patterns and mark the tide of years.

Can you imagine a different ending for the lovely lady with such a diary? Can you see her enter another room that does not end in broken faith?

Half of Me

The other day I got a call from Cindy Throop.  She had decided on the patient story for her jacket.  She was coming out of the closet about suffering from depression.   For 20 years she has suffered from the effects of depression, and now she has decided to let others know.  Mental illness is still a no man’s land for many of us advocates.  Oh, you can talk about cancer and dying.  You can even talk about unhygienic beside tray tables.  But there is a feeling of “Shh, we don’t talk about mental health.  It is verboten.”  What if we lost our job?   What if we could never get health insurance because we admitted to depression?

I once went without health insurance for three years, because I was too scared to admit I had been depressed. 

In 1993, I was 21 years old and in Navy technical school.  I was suffering from situational depression.  It was really bad.  I missed Fred and my family.  I was bunking alone in a strange city.  I knew almost no one in Chicago.  I was spiraling into sadness.  During this dark time, I was admitted into the Naval hospital for psychiatric treatment.  I didn’t take drugs for depression.  I just talked with the counselors, and I drew. I find art to be an amazing form of medication.

I began a very large pencil drawing.  The staff said it was a nice picture, but why the really big empty space?  I explained that it was my life story, and my life was far from over.  I think that was the right answer, because I was soon released.

A year later I was hired at Child’s Play, a toy store in Washington, DC.  Within a few months, they gave me a form to fill out for insurance.  I read the questions on it.  “Were you hospitalized in the last five years? And if so where and for what reason?“  I was terrified and embarrassed.  I knew I could not fill out that form and turn it in.  I told my boss I was turning down the insurance.  He looked at me quizzically,  “You understand that we pay for it, it won’t come out of your salary.”  I still shook my head no.  He continued, “If you don’t come aboard now you will not be eligible for another year…” I still said no, I did not want it.  He walked away shaking his head.  In 1995, 1996, and 1997 I would be given the form again.  Each time I would turn down the insurance after reading, “Were you hospitalized in the last five years…”

I met Cindy a little less than two years ago.  She is part of my health 2.0 Ka-tet.  I met her at the same meeting at which I was introduced to Ted Eytan and Susannah Fox.   We hit it off almost immediately since we had so many things in common.  She is now one of the emergency contact people for my children, and she created my advocacy time line on open health.  She is funny and kind and often brings a little stuffed animal to events called Throop Cat.

In this painting there are two Cindy’s.  They are framed within the shape of an unlit bulb.  The Cindy in yellow is happy and joyous beside her is a Throop cat dressed in a small shirt with a happy face upon it.

Below this Cindy is another dressed in gray.  This Cindy is stern and sad.  She types upon a laptop the words “You are only treating half of me.”  Beside her is Throop Cat again --but this time in a straitjacket.   

You see, those of us who follow Health Information technology and Meaningful Use are concerned about information access related to mental health.  I first heard speeches about this issue almost two years ago at my first Alliance for Health Reform meeting. The Alliance for Health Reform is a nonpartisan, nonprofit group; it doesn’t lobby or take positions on legislation.  But it does create excellent panels of speakers discussing very important topics within healthcare.  (They also provide box lunches.)  I registered for the event Healing Mind and Body: Behavioral Health and Reform on Friday, July 17, 12:15 PM to 2:00 at The Columbus Club, Union Station. The focus of talk wandered into a topic area I was very interested in EMR (Electronic Medical Record) access.  And unlike many of the groups I listen to, this room was deeply fractured on patient access.  We were talking about record access within the world of mental health.  And in this venue, even having a medical doctor access the same EMR as the mental health provider was controversial; forget about letting the patient have access to the information.

I stood up to ask a question in the Q&A session at the end.  I asked about my husband's case.  Could Fred have lived if our system was designed to treat the mind and the body?  Would he still be alive today if psychiatrists required full physicals and accessed that information?  Would he still be playing with his sons if he had been treated as a whole patient?

In the spring of 2008, Fred and I saw a psychiatrist every week from late January until May.  Fred had been very depressed, fatigued and was losing weight.  Our son had just been diagnosed with Autism, and he had taken that rather hard.  Fred was also very sad that although he had been an adjunct for years, he could not find a full time job.  The psychiatrist was an incredibly nice man who saw us even though Fred did not have insurance and we would have to pay out of pocket.  We talked through our problems, and it seemed to help Fred’s emotional state.  That summer Fred was hired at American, and that helped raise his spirits considerably.

In the fall of 2008, Fred was very tired and became sad again.  He said, “Reggie, I don’t understand.  I have the job I always wanted.  Why don’t I have energy?”  In January, the pain began.  In the following weeks, Fred would visit two emergency rooms and visit his doctor over a half a dozen times.  He would get pain meds but no diagnosis.   Finally, in mid-March, after the second fruitless ER visit, I would go with Fred to his doctor.  I would see that they didn’t weigh him.  When we appeared before the doctor, she would ask for the first time, “Mr. Holliday, do you think you are depressed?”  Fred looked at her incredulously. Now, perhaps this was code for “Is this all in your head?”  But I answered, “Of course he is depressed, he is in constant excruciating pain.”   

I was frustrated such a question was asked in such a way so late in the game.  My dismay continued in hospital after hospital setting.  Fred’s condition worsened, and pain both physical and emotional was treated by another drug, but rarely counseling and the arts.  I am very glad that Cindy is coming forward to walk in the Gallery and spread awareness about living with depression.  Perhaps her efforts will save a few Freds or help a few Reginas feel free to claim the insurance or type of treatment they need, and finally, we can be treated as "whole" people.