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