This document discusses the importance of patient access to electronic medical records (EMRs). It shares one woman's experience becoming her husband's caregiver and advocate by learning to use various digital tools when he was diagnosed with cancer. She questions how patients and advocates will access standardized EMR information. While one response acknowledges her efforts, it does not address patient EMR access. The document advocates for giving patients their data and ensuring technologies support communication to avoid medical errors.

1. Meaningful Use Patient Access and the Mask of the Red Death Even with the utterly lost, to whom life and death are equally jests, there are matters of which no jest can be made. –Edgar Allan Poe

2. 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?” -Regina’s Question to Aneesh Chopra 6-29-09

3. “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.” -Aneesh Chopra, Chief Technology Officer and Associate Director of Technology I did not see patient access to the EMR addressed within his answer I would paint a large mural called 73 Cents in the next three months to address this lack of patient access to the Electronic Medical Record.

4. This is my husband’s medical record. I was told it would cost 73 Cents per page and I would have to wait 21 days to get a copy.

5. I have a favorite Infusion pump. The Hospira pump had different ring-tones for different problems. I loved the fact it would only allow staff to push the silence button a few times before an alarm would sound and a medical professional was forced to solve the problem. I loved that pump so much that I painted it in to the picture. One of my friends said it was the saddest part of our Story. I loved this pump because it was technology that forced communication

6. 46 Ambulance Transports Team Critical Care really cared, they did everything 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.

7. Facebook: a way to goof off at work? Facebook: a PHR with privacy issues?

8. “Give Us our Dammed Data” What does Meaningful Use and HITECH have to do with patient safety?

9. The Onion and The Orchid 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. Why do this? I wasn't preparing to sue the hospital. 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. Patient Engagement can help the individual as well as the system……

10. Do you know what sunk the Titanic? It wasn’t an ice burg… It was refusal to listen to wireless communication warnings.

11. The Medical Reconciliation Report: What has he been taking? What is that sitting in the open trash can? What are the warnings and side effects of this drug? Why can’t patients access this? Why can’t we help

12. “Have a seat, just throw those on the floor.” -Waitress May 2007 Death of the Paper Transfer

13. If a child’s toy can figure any item in the world in 20 questions, why Can’t we have CPOE and CDS in every hospital and family practice? 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?

14. A “Wordle” is a word cloud, the one pictured below is “CMS EHR Meaningful Use regulation 123009” by David Harlow of the HealthBlawg Do you see the word patient? Let’s work on making that word bigger