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Meaningful Use,[object Object],       Patient Access and the Mask of the Red Death,[object Object],Even with the utterly lost, to whom life and death are equally jests,,[object Object],there are matters of which no jest can be made. –Edgar Allan Poe,[object Object]
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.,[object Object],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?” ,[object Object],-Regina’s Question to Aneesh Chopra 6-29-09,[object Object]
“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.”,[object Object],-Aneesh Chopra,,[object Object],Chief Technology Officer and Associate Director of Technology ,[object Object], ,[object Object],I did not see patient access to the EMR addressed within his answer ,[object Object],I would  paint a large mural called,[object Object], 73 Cents in the next three months,[object Object],to address this lack of patient access ,[object Object],to the ,[object Object],Electronic Medical Record. ,[object Object]
This is my husband’s medical record.,[object Object],I was told it would cost ,[object Object],73 Cents  per page ,[object Object],and I would have to wait 21 days to get a copy.,[object Object]
I have a favorite,[object Object],Infusion pump.,[object Object],The Hospira pump,[object Object],had different ring-tones for different problems.  I loved the fact it would only allow staff to push the silence button a few times ,[object Object],before an alarm would sound and a medical professional was forced to solve the problem.,[object Object],I loved that pump ,[object Object],so much that I painted it in to the picture.,[object Object],One of my friends ,[object Object],said it was the saddest part of our ,[object Object],Story.,[object Object],I loved this pump ,[object Object],because it was technology that ,[object Object],forced communication,[object Object]
46 Ambulance Transports,[object Object],Team Critical Care really cared, they did everything,[object Object],They could to ensure excellent care.  They called to check on us, they talked me through the steps to complete a hospital transfer and they created transfer forms designed to stop insurance denials.,[object Object]
Facebook: a way to goof off at work?,[object Object],Facebook:  a PHR with privacy issues? ,[object Object]
                “Give Us our Dammed Data”,[object Object],What does Meaningful Use and HITECH have to do with patient safety?,[object Object]
The Onion and The Orchid,[object Object],While Fred was in hospice I wrote a very long letter to the first hospital Fred had been admitted to. This was the hospital that told me I could see his record after I paid 73 cents a page and waited 21 days. I sat next to my sleeping husband as he approached his death and calmly wrote a letter that referenced his medical record and provided dates and names and recounted the many types of harms this institution had inflicted upon Fred.,[object Object],Why do this? I wasn't preparing to sue the hospital.,[object Object], I wanted to inform the management of this facility of the problems we had encountered. I had hoped we could encourage a necessary change within the organization. I hoped to channel the grief and frustration I was feeling into some kind of positive outcome. I also wished to regain our dignity, for in the process of becoming victims we had lost our personhood.,[object Object],Patient Engagement can help the individual as well as the system……,[object Object]
Do you know what sunk the Titanic?,[object Object],It wasn’t an ice burg…,[object Object],It was refusal to listen to wireless ,[object Object],communication warnings.,[object Object]
The Medical Reconciliation Report: ,[object Object],What has he been taking? ,[object Object],What is that sitting in the open trash can?  ,[object Object],What are the warnings and side effects of this drug?,[object Object],Why can’t patients access this?  Why can’t we help ,[object Object]
“Have a seat, just throw those on the floor.”,[object Object],-Waitress  May 2007,[object Object],      Death of the Paper Transfer,[object Object]
If a child’s toy can figure any item in the world in 20 questions, why,[object Object],Can’t we have CPOE and CDS in every hospital and family practice? ,[object Object],Why can’t a patient input their own data using medical app on a smart phone while waiting in office or prior to the appointment?,[object Object]
A “Wordle” is a word cloud, the one pictured below is “CMS EHR,[object Object],Meaningful Use regulation 123009” by David Harlow of the HealthBlawg,[object Object],            Do you  see the word patient? ,[object Object], Let’s work on making that word bigger,[object Object]

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