Marvel Comics, but I must admit I did watch a good deal of The Superfriends. This cartoon was filled with iconic heroes of the DC Comics universe such as Superman, Wonder Woman and Batman. As the series progressed, the show introduced two new sidekicks: the Wonder Twins. They were not quite as powerful as the others and were young and sometimes rather annoying. Zan, the male hero would turn into any form of water. Jayna, the female hero, would change into the shape of any animal. There was a catch though. They had to work together to effect change. They would bump their fists in the air and proclaim, "Wonder Twin powers, activate!"; only then would they change into their desired forms. Even though I watched the show for years, prior to writing this I could not remember their names. In my mind's eye they were only the Wonder Twins.
On Tuesday April 20th I testified as a member of Panel 1: "Meaningful Use of HIT in the Real Lives of Patients and Families" at the HIT Policy Committee Meaning Use Workgroup. Dave DeBronkart testified on Panel 2: "Incorporating Patient Generated Data in Meaningful Use HIT". Most of the speakers in the room had been working in medicine or HIT for many years. If you looked in the agenda you would see a presenter's name and where they worked. There was an amazing amount of talent and work experience in the room. Representatives were there from Epic, CVS Minute Clinic, Johns Hopkins University, Intel and several other parties. First you saw their name and then you saw where they worked.
If you looked at my name, it said, "Regina Holliday, patient voice."
If you glanced at Dave's name it was: "Dave Debronkart, ePatient Dave." We joked beforehand that we must be the Wonder Twins. Dave is seeping throughout the Twitter-sphere promoting participatory medicine. He is part of the current that is washing away an old system of a patriarchal division of labor in medicine. And I will change into whatever form is needed to bring patients' stories to light. I am the quiet painter. I am the outspoken critic demanding access to the record. I will turn into whatever animal is needed to effect change. Together we are powerful. Patient voices are strong when they call out in unison demanding change.
Regina Holliday, patient voice. It was a rather ironic title in view of my testimony, for I am not very patient anymore. I stated in my testimony, "In closing , I recently saw an ad from the American Hospital Association promoting adoption of electronic health records using an 'incremental and realistic policy'. The images in the ad contained doctors and technology, but there was not a patient to be seen. When I speak of HIT, I am speaking about lives, not livelihood. Patient access can save lives; it can stop soul-crushing fear. I have spent this last year fighting for information access, and I say the time for incremental change has past. This is the time we demand our rights to see our data."
I listen to my friends working in patient safety and my friends in information technology, and I hear. I hear the part of the tragic story where information access could have changed outcomes. I hear how experiences could have been better and people could have lived. I think of how different the medical world would be if instant access was the norm rather than an ideal I fight for.
I remember many years ago getting ready for my wedding and check-proofing the invitation. I remember combing over the wording trying to make sure it was very clear. The print shop clerk said they would not print it without it my authorization. I remember many IEP meetings for my son where I went over pages and pages of documents correcting errors and amending the record so my son would have the best education opportunities available to him. I remember proof-reading ad-copy for Jayhawk Bookstore when I managed it. The paper would not go to press without my sign-off on the ad.
I remember all of this, and I remember siting in a hospital for days begging to see my husband's medical record.
Why are we competent and able when it comes to our weddings, our education, and our jobs, but suddenly when it comes to data about our lives, we are not given access? I sit crying at the computer screen when I think of Sorrel King. Do you think she would have missed the order for oral hydration for her young daughter if she had had timely access to the record? What if the hospitalized patient had a daily treatment summary instead of only an after-the-fact discharge summary? How many lives would be saved? How many Freds would have the catheter placed before infection? How many Josies would avoid a fatal dose of pain medication? How can we wait any longer?
Comic book super-heroes and patients may seem to have little in common. Perhaps you think it wrong to put them together in a blog post. Death and ink, paint and sorrow: they sit side-by-side in life and cannot separate even when the subject is deadly serious. We need our heroes. We need those people and patients who will stand up and speak against the status quo. I recently read a very good article called Story Power. Here is the link. It explains this relationship in depth. Fred would be so proud. He was a firm believer in the power of stories. He would be so glad to know that patients' stories are changing and saving lives.
I am glad Dave and I can help create a better world for patients. I am glad that we can activate change. Patients may seem a little annoying at times, but we can help save the day. We are a vital and important part of a much larger Justice League.