On May 27, 2009, I was invited to present a patient/caregiver view of hospitalization at a small health 2.0 meeting in Washington, DC. I saw PowerPoint presentations with bar charts and graphs. I sat patiently taking notes about the state of “e-health” and social media. At around 3:15 p.m., I spoke. I described the horror of my husband being diagnosed with cancer and of terror of not being told what was going on. I spoke about the fight we had fought to get to get a copy of the medical record. I recounted the numerous times I had used the information in his record. That record sat upon the table in a three-inch binder. There was silence in the room. We were no longer speaking in the abstract about patients. They asked me to focus on what was the worst thing that had happened through this entire tragedy. I told them the worst thing we experienced was lack of access to my husband’s data.

On March 27 my husband, Fred Holliday, was diagnosed with probable kidney cancer (renal cell carcinoma (RCC). I became an e-patient, a caregiver and a medical advocate. I would use the internet for both research and patient/family support. I researched his cancer using Google, reading the Wikipedia entry on RCC with all of its links, and finding personal cancer stories. Facebook became the information source on Fred’s medical status. On June 17, Fred died. I was his caregiver for his last six days. In home hospice I was in charge of the MAR that I fought so hard to get copies of. On June 21, I sent an email stating I would do everything in my power to fix a medical system that keeps patients and families in the dark. I would post on Facebook, blog, Tweet and paint.