A common worry that healthy people voice is that patient-controlled records are a fine idea, but the truly vulnerable will be left behind by them. Because of my disability, I find this misconception frustrating, especially when it is used as an excuse to deny patients digital access.
By the time I came to England at the age of 10, I was already quite deaf. My deafness worsened over the following five years, but like most young people embarrassed about sticking out because of their illness, I did a good job of hiding it. It was only at age 15 that everyone could tell I was struggling, and I was forced to wear a hearing aid. By that year, although I was sat at the front of all my classrooms, I could barely hear anything the teacher said, and often had no idea what homework I had been set.
My only saviour was the existence of tools that allowed me to study by myself. In mathematics, I did particularly well because the schools had adopted Nuffield mathematics textbooks, and allowed each student to study at their own pace. In the silence around me, I would read the book, do the exercises, and finish a year ahead of my classmates with normal hearing. In other subjects, my grades were better the more I had access to computers. With computers, I could work more quickly, making up for the time in the class that I was not able to use. I could also learn independently, and produce better looking homework than my classmates did.
Tools for self-management were the only way I could overcome my disability.
I was reminded this while watching the computer of a patient yesterday testing out Patients Know Best. She cannot see, something I kept on forgetting because she was so deft in navigating the computer. And it was only at the end that I understood that she was operating the mouse with her voice and the keyboard with her toes.
I asked her about our new test results feature. Most clinicians and most people tell me that such a feature is of little use, that patients do not really want their results online. But when I asked if she would want this, she emphatically said “yes please, I would love to have my test results”. Why, I asked? Because, she said, I cannot read the pieces of paper they have in clinic. But my computer would read these results to me whenever I wanted to understand my health.
There is no digital divide, only a digital bridge.