When a Twitter icon indicated I had a new direct message last Tuesday, I took my time opening it. I was down with a bad case of the flu, including a fever and a cough that had stolen my voice, and I wasn’t at the top of my game. However, when I finally clicked on the icon, I felt a jolt of adrenaline.
The message was from “@PresCancerPanel” and started “We’d like to invite you to …”
I leaned forward to double check. I wasn’t hallucinating. The President's Cancer Panel had invited me to participate as a patient advocate in one of their workshops. I almost screamed "YES!", but given my voiceless state, I responded on my iPad as fast as my fingers would permit.
The workshop in which I will be participating is titled, "The Personal Health Data Revolution, Connected Health, and Cancer." It will touch on several topics of interest to me: value of patient networks, ownership of patient-generated data, changing the research process, using electronic health records for the benefit of patients, and privacy and security safeguards. I'm hopeful I will be able to make a valuable contribution to the workshop and make a difference for cancer patients.
I anticipate this workshop will address technology opportunities such as:
leveraging patient networks to accelerate cancer research and improve outcomes
acknowledging that patients own any data generated as part of their care
using devices such as Apple’s new ResearchKit to connect patients to their clinical trials
making clinical trial searches easier and more understandable
ensuring medical records follow the patient for second opinions and treatment at different facilities
I feel honored, and still a bit stunned, to be a patient voice at this event. If you have any inputs or links to resources you wish me to see before this workshop, please post them in a comment.