Everything we ever wanted… Resolutions January 2008:1. Get Medical Insurance for the whole family 2. Get little Freddie into a special needs school 3. Fred gets a job in his field 4. Spend more time together as a family 5. Get a two bedroom apartment Freddie’s IEP Binder
Fred was happy with his new job.But he was very tired,He went to the doctor and wasdiagnosed with hypertension.
During the months ofJanuary, February and March of 2009,Fred was in constant pain.
On Friday March 13th, We went to the ER because Fred was in so much pain .We waited three hours before being sent home.
Fred was hospitalized on March 25th 2009 for the administration of tests.On March 27th, he was told while alone thathe had “tumors and growths.”He was scared and confused and did not understand.His oncologist left town for the next four days to a medicalconference and was not reachable by phone or email.
What was the diagnosis? What were the treatment options? Would he get a pain consult?
After waiting for 5 days for a transferto another hospital for a second opinion,We were sent with an out of dateand incomplete medical recordand transfer summary.The new staff spent 6 hours trying tocobble together a current medical recordUsing a telephone and a fax machine.
This is thevital clinical informationfrom Fred’s electronic medical record.Presented in the style ofthe Nutrition Facts Label.Then painted on the wall ofPumpernickel’s Deli inWashington, DC.
Why did we get more help and answers fromSocial Media than from our local hospital ? I got on Twitter on May 3rd to find Christine Kraft and e-Patient Dave to talk to them about kidney cancer. Within one day were in email contact and then spoke on the phone. By ten o’clock May 4th 2009, I was talking on the phone with Dave’s Oncologist about my husband’s cancer.
On May 27th, I met group of amazing folks at a small Health 2.0 meeting.They asked, “ What was the worst thing that happened?”I responded, “Lack of access to the medical record.”
We fulfilled our final 2008 resolution on June 11th 2009.We moved into a two bedroom apartment so I could care for Fred in home hospice. He died six days later on June 17th, 2009
Standing out and looking different,Can be uncomfortable or frightening.But is often needed for advocacy.
Two years after painting 73 cents,Freddie grows beyond peering throughadoor crack to walking in a Gallery.
Welcome to the Walking Gallery.Telling the patient story one jacket at a time.
On July 13, 2010 I had the honor of speaking before the assembled at HHS. I presented the patient voice within Meaningful Use.There was another Regina there that dayDoctor Regina Benjamin, Surgeon Generalpresented her very gripping reason she supportedElectronic Medical Records adoption in the united States.
On September 13th 2011,I met Regina once again. This was the launch ofthe Consumer e-Health ProgramThe “I” in HITat the Department of Health and Human Services.
But here is the real meaning ofthe “I” in HIT.Isaac at his Doctor’s appointmentwith his EHR in his hands. The in HIT
Thank you for helping patients and families access their data. It means the world to us.