My personal healthcare story starts when my perfectly healthy mother couldn’t fight off an innocuous cough. After multiple visits, her PCP finally suggested a chest x-ray which uncovered a single cell carcinoma of the lung, stage 4. It was at this time we understood it would become a fight and we needed to be prepared to make critical decisions as a family.
Our family would become a cancer-fighting team and we assumed our doctor would be the quarterback. Our playbook would be driven by tests results including specialized genome testing and lab results. The results would be uploaded to an online EHR that would become our tool for sharing data so we could make critical decisions quickly. We quickly realized that this plan was flawed and it wasn’t just the technology, but timely access to complete data. The essential tool that we needed to rely on would only provide us information from half my mom’s medical records and would take weeks to become available. This ultimately postponed critical decisions within an already shortened life expectancy window.
During a visit to the primary ER, we were also shocked to learn that they did not have access my mother’s records since we had accessed them online. I ended up handing the attending doctor my iPad to see my mother’s charts. This saved us not only time in the ER, costly and repetitive tests, but helped the ER doctor explain to my mother her situation in the most professional and direct way possible. I hope this short story of our experience through a tough life situation will bring attention to how timely access to information matters – it can impact the ability to make decisions and the precious time of a patient whose life expectancy is already shortened - and can empower families and caregivers in their most critical times of need.