Recently, I was invited to attend the Medstar CMIO (Chief Medical Informatics Officer) boot camp by Trenor Williams, MD, CEO and co-founder of Clinovations and Gerard Burns, MD CMIO at MedStar. Dr. Burns had seen me speak on July 13 at HHS upon the announcement of Meaningful Use. He had thought I would be an excellent guest speaker (In my youth, I spent six weeks at Navy boot camp, and this was much nicer.). It was a conference held at the Doubletree in Columbia, MD. It was a calm, low-key event. I passed by a pool filled with families enjoying an end of summer swim as I entered in the mid-sized meeting room. I was very happy to be invited, and I thanked both the folks from MedStar and Clinovations.In the weeks prior to the event, I researched several terms and acronyms we would be speaking about. Jeremy Wong, also from Clinovations, asked me to consider any articles I would like to include regarding “how patients feel they have been directly affected by something that occurred when their doctor used CPOE or clinical decision support.” Hmm… Well first I had to find out what CPOE and (CDS) clinical decision support meant.
CPOE is Computerized Physician Order Entry and is a very large aspect within the EMR and Meaningful Use. I don’t think many patients are talking CPOE. I did a search and found quite a few HIT (Health Information Technology) venders promoting the positive outcomes of CPOE adoption. I found the government encouraging certification of systems and patients advocacy groups concerned about potential deaths due to computer error. Where were the e-Patients in this conversation? I couldn’t find any reports or blogs from a patient perspective discussing CPOE.
As it was with CPOE, so it went clinical decision support. Clinical Decision Support Systems are computer programs that assist physicians in the decision-making process during diagnosis utilizing patient data. I could find virtually nothing written from the patient perspective on this subject. In researching patient involvement within these two terms, I felt like I was hitting my head against a wall. Physicians and hospitals were having a party, and they didn’t invite the patients to the gala event. So my mind began to search within and thought of gothic horror.
Instead of CPOE, why not see: Poe. (Edgar Allan Poe, that is.) That thought brought me right back to my 10th grade English class and The Mask of the Red Death. I knew what I would speak about at CMIO boot camp: Meaningful Use/patient access and The Mask of the Red Death.
On the way to the event my friend Dr. Ted Eytan and I had such a wonderful conversation in his zip car. He answered the final question I had. “How do you pronounce CPOE? As in "C.P.O.E.", or is it "see Poe"? I can’t find the pronunciation online.” Keeping his eyes on the road and smiling, he said that it was cute that I didn’t know how to say it. CPOE is pronounced. C.P.O.E. We laughed together as a doctor and a patient and went on with the drive.
Around noon, I was introduced as the guest speaker by three doctors: Dr. Gerard Burns, Dr. Trenor Williams and Dr. Ted Eytan. I was quite the special guest by the time I spoke. I decided I would inform the room of my ignorance of the correct pronunciation of CPOE. I could have just pretended prior knowledge, but instead I thought I should make it clear how little patients use these terms. I find great problems persist within the doctor/patient relationship when we smile and nod pretending to understand. So I admitted my ignorance of the correct pronunciation. I was surprised when the audience responded that both were right; it depended on the hospital. I told them great, because when I think of CPOE, I think of Edgar Allan Poe. I then asked how many in the audience had read The Mask of the Red Death? Three people raised their hands out of 40.
I was really feeling like a special guest speaker at that point. I had been married to a man who had a doctorate in film studies with an emphasis in television. We had often talked about special guests. In television, the special guest is sometimes a celebrity, but is always a performer outside of the regular cast. They do not belong. Often their insertion into the plot indicates the moment a television show has jumped the shark and fallen into the world of the absurd. Well, I could ignore the vision of my speech, or I could begin a dramatic recitation of The Mask of the Red Death. Have I ever mentioned that I was Oklahoma State Champion of Poetry Recitation in 1991? I decided to perform a tale of gothic horror.
"A prince invites the members of the aristocracy to masquerade ball at his abbey where they weld the doors shut as a plague called the Red Death blankets the land. As the partygoers enjoy the festivities flitting back and forth through six brightly colored rooms, a clock chimes on the hour, and silence falls each time. As the party continues, a figure costumed as a corpse appears. The prince takes such a costume as an affront and confronts the ghastly guest in the final seventh room drenched in the color black with red light streaming in. Upon facing the figure the prince dies and the party attendees soon find the guest wears no costume: the Red Death has walked among them."It is powerful reading, don’t you think? It also functions as a very apt cautionary tale when you consider the way the CPOE is utilized in hospitals.
Why can’t I find the patient perspective on CPOE? We have not been invited to the ball. Where is the patient information entry aspect to be used in conjunction with the physician’s input? As the Meaningful Use rule points out, patient access is the core element in the functionality of a viable EMR (Electronic Medical Record.) While researching, I was deeply offended by the jovial comments about “sweet stimulus cash” that I saw posted on many HIT pages. Too many companies view ARRA and HITECH as a party they can attend while death walks the land. Locked up in ivory towers or data silos, too many members of the medical establishment are locking themselves away and closing the venues for communication.
I told the audience at the CMIO boot camp that twelve days after my husband Fred died, I attended NHIN Connect 2009. The grand ballroom at the JW Marriot was filled with HIT leaders, hospital administrators and physicians. I asked a question of Aneesh Chopra, Chief Technology Officer and Associate Director of Technology, whom had delivered the second keynote. My Question was, "Hi, my husband received his diagnosis of renal cell carcinoma on March 27. At that point, I began to email, do Internet research, try to find every resource I could to help him. I began to Facebook--Facebooked every night, daily stating his status, developed over 200 friends and then began to Twitter, ended up speaking to a doctor from Boston, Mass. Did everything I could as a caregiver to support my husband using the Internet. Developed a blog. Also asked for Internet data. Prior to this I did not (often) email, nor did I use a cell phone. During a three month period (I) became complete caregiver and a walking PHR for my husband. I am asking you: how will the patient and patient advocate be allowed to access the information of (the) EMR, to have that a standardized form, that we all as advocates of our spouses or loved ones, (can) provide the best the best level of data and catch all kinds of errors in the medical record?”
His response compared medicine to retail, with medicine in a negative light. He mentioned plasma screen televisions and computer assisted advertising and then concluded, “I applaud you for what you (are) doing with limited resources to try to help your family, but I am committed to making sure we have a foundation available so that clinicians on their own and by themselves and amongst themselves can start to have those kinds of transactions captured.”
I did not see patient access to the EMR addressed within his answer. I was a widow fresh from the graveside asking questions that affect the lives of us all. I was not supposed to be there. They were having a ball and I was Death walking among them.
I should have quoted Poe: “Even with the utterly lost, to whom life and death are equally jests, there are matters of which no jest can be made. “
The CMIO speech lasted about thirty minutes. After the speech we had a very nice lunch. They were happy to see that I wanted to stay for some of the after-lunch sessions. I got to hear quite a bit more about CDS, EMR’s and Meaningful Use. I heard quite a few folks mention they used Cerner systems. My ears perked up, as I had attended the Meaningful Use Summit at Cerner in June and had gone through their virtual tour of the Cerner EMR system. As the folks from MedStar began discussing the subject of making the EMR more patient-centric, I mentioned in the open Q&A that Cerner’s system could allow for a visual avatar to be incorporated to the functionality of EMR. An avatar, be it an actual photo of the patient or an image chosen by the patient, is very important in creating greater visual memory. I further added, “Why do you think Facebook and Twitter are so successful? They do not take our faces away.” One of the CMIO’s responded that that function had been turned off within their system.
I remembered when I was seeing all the amazing abilities of Cerner’s EHR/EMR systems I asked if any hospitals were doing these patient-centered things. They responded, “Yes, if the client decides to implement that feature.” “So, that client would be the patient?”, I asked. The really nice folks Cerner paused and looked slightly concerned. “No--the client is the hospital.”
That is the wrong answer. We are the clients. We are the end users. We are all patients in the end. And although it was meant to display respect, I am not a special guest. I am a patient, and we are refusing the one-off part. We want to be part of the cast. We want to be a ubiquitous part of every panel and every conference. Someday, I want to stand beside Ted Eytan, Trenor Williams and Gerard Burns and together say “Remember when it was unusual to have a patient on a panel?”