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, FebruaryandMarch 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.
Facebook: a PHR withPrivacy Issues?In the seven months prior to diagnosis,10.7% of Fred Holliday’s Status postsrelated aspects of his current medicalcondition…He exhibited all of the most common symptoms ofRenal Cell Carcinoma he listed 5 of them on Facebook.
Why did we get more help and answers from Social Media than from our local hospital ? 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.I am trying to talk with Christine Kraft and epatientDave.
Inside of every EMR there is a patient story,And sometimes it is told by Betty of Bellin Health.
Welcome to the Walking Gallery.Telling the patient story one jacket at a time.
Freddie grows beyond peering througha door crack to walking in a Gallery.
Isaac grows up.He misses his father’s arms.He joins the gallery as an artist.His jacket is named “Feelings.”He is marching in a rally supportingpatient data access.
Standing out and looking different,Can be uncomfortable or frightening.But is often needed for advocacy.You can take a negative and turnit into a POSITVE.
As of October2012, 186 unique Walkers have joined wearing205jackets.The Gallery has representatives on five continents, but the majority of Walkersreside in the US.One artist creates the majority of the art, but new artists are joining and currentlymake up 14% of content creation.The Gallery is promoted heavily on twitter, facebook and personal blogs.
Let Patients SpeakWe must encourage every committee,sub-committee, and hospital board, to activelyrecruit and include patients in every aspectof the care process from design toimplementation to resolution.Noting about us without us.From the exam room to the board room.
What Measures Matter to Patients?What is the differenceinWITH vs. For?