The View From Below

The public comment of Regina Holliday on 

“A Prototype Consumer Reporting System For Patient Safety Events”
(I have placed the slide image below in many of my speeches since September to encourage people to follow your work on this.)

Dear AHRQ Desk Officer and Doris Lefkowitz,

I have spoken at length these past four years since the death of my husband Frederick Allen Holliday II about the need for the patient/family caregiver to have real time access to the electronic medical record and the need for a national abuse telephone number/website for the reporting of harm.  We desperately need this because there are always two sides to every story.   As today is Sunday and the last day to report comment I will tell you this story.

As a child I would sit beside my mother in Church and draw. I know it is important to pay attention in Church, but I thought God would not mind if I drew pictures from the Bible.  Eight years ago my son Freddie began drawing in Church. During one service, I looked down to see a peculiar picture on his drawing pad. The picture consisted of a series of small houses lined up along the bottom of the paper. Above the houses stood stick people and fish in the sky. Along the very top of the page was an elongated oval. I was stumped trying to figure out the meaning of this image. In my best Church whisper I asked, “What are you drawing?”

He looked at me as though I was being particularly dull and said, “Noah’s Ark…from below.”

I have seen many versions of Noah’s Ark in my life; but for the most part each picture contains a boat, animals, sunny blue sky and a rainbow. I never saw a picture of what lies beneath until Freddie’s drawing. I guess it is just a matter of perspective. Both images are equally valid and each focuses on a different part of the story.

Healthcare up to this point has been very blue sky focused.  I commend you for your attempt to help us show the view from below.

I thank you for your request for comment on a Prototype Consumer Reporting System for Patient Safety Events.  It is nice to be asked our opinion on such a important topic.  I read your proposal.  The language is a little hard to follow but to sum up:

The Agency for Healthcare Research and Quality (AHRQ) to request that the Office of Management and Budget (OMB) ask for approval of an information collection project: “A Prototype Consumer Reporting System For Patient Safety Events.”

Patient Advocates heard about this first in September of 2012 and had 60 days to comment, most of us missed this window, as it was not well publicized.  AHRQ did get 45 comments and 65 personal stories in those 60 days.   The project hopes to design and test a system that collects reports of harm using standard definitions and forms.  Local providers can then use this data “to create or enhance their own local reporting systems.”

Now that clause bothers me a bit because a lot of us have already been reporting harm to our local providers and either getting no response or getting the response that our harmed loved ones were treated “within the standard of care.”

You mention that most healthcare systems do not ask for nor promote patient reporting of harm.  I would respond it has been rarely in their financial or workflow interest to do so.  You mention AHRQ is aware of the important and unique perspective of the patient/family caregiver.  I would hazard to say that you recognize it because you are looking at the entire web of care throughout the US.  You see the value in data aggregation from a wide variety of sources.

So it is the best interest of this study to consider large regional or national harm reporting.  We have suffered through the voluntary local provider method for far too long. 

(According to your letter, this research has the following goals)

1. To develop and design a prototype system to collect information about patient safety events.

Great! Let us know how we can help!

2. To develop and test web and telephone modes of a prototype questionnaire.

I would highly recommend you look at what Traitwise.com is doing in the survey world to see a system that has ease of use foremost in mind.  Also please get some folks that are well versed in plain language to look at your word choice.  The problem of being so well staffed with academics and researchers is that your word choice often reflects your worldview.

Also pictures and visualizations can be very helpful in creating greater understanding of the event intake form online.

3. To develop and test protocols for a follow-up survey of health care providers.

This demonstration project is being conducted by AHRQ through its contractor, RAND Corporation, with Brigham and Women's Hospital, Dana Farber Cancer Institute, and ECRI Institute…

Now, I am a mite concerned about the part where you talk about checking a patient report of harm against provider’s incident log. I personally saw a great many incidents of harm that occurred to my late husband while hospitalized but were not reflected in his medical record.  In some cases this was omission in some cases blatant falsifications were recorded.  Are you using the medical record to substantiate reporting of incidents?  If so are you enquiring whether the patient and family caregiver were able to read the record in a real time fashion and able to amend errors in the record?

Those are my most pressing concerns right now.  Please do reach out to us in the world of patient advocacy to help in the next phase of this project. 

I must confess when I think of your organization in my mind I do not see AHRQ but an Ark.  I see a promise to gather data in a kind of binary 2 by 2.  I see a willingness to spread the knowledge that comes from that data.  

Thank you for reaching out to all of us known as “the harmed.“  We will willingly share our saddest moments, our deepest hurt if by doing so you can promise it will never happen again.  

We want to join you in building a rainbow, a spectrum of the many views in health care.

Regina Holliday,

Patient Activist and Artist, Founder of The Walking Gallery in 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?