Put the power in patients’ hands
“Mom, how did it go. What did he say?”
The day my mother was diagnosed with kidney cancer was one of the most confusing days of our lives. The diagnosis coupled with a whirlwind of emotion meant most of the information the doctor had given her was thrown by the wayside. Once the initial shock wore off, the questions began and all we had to refer to were three pamphlets and a few messy notes my father had brought back from the appointment.
What do you really remember after you leave the doctor’s office? For most of us, it’s not a lot. According to a 2003 paper by Roy P C Kessels, PhD in the Journal of the Royal Society of Medicine, “40-80% of medical information provided by healthcare practitioners is forgotten immediately.” Even after an average visit the information can easily be lost and most of us wonder why there isn’t a way to access those notes later.
This underscores the importance of patient engagement. A lack of understanding and knowledge breeds fear of the unknown.
In my mother’s case, this lack of understanding stood true. She had prepared herself for chronic back aches, not cancer. Just typing the word puts a pit in my stomach. I can’t imagine sitting in the doctor’s office while he/she is telling me that it has been there for two to three years as I’m trying to decipher medical jargon. How was she supposed to remember anything following those six letters? Why wasn’t she given anything to help her remember what the doctor had told her? I’m not talking about a handful of pamphlets that generalize the situation; let’s face it, are the pamphlets really all that helpful?
It wasn’t until my mom’s second or third appointment that the information finally began to sink in, and the doctor’s plan of action became clear. It’s frustrating that it can take patients this long to understand what is going on in their own bodies.
Better patient engagement strategies reduce this friction. When a practitioner gives the patient access to their information, they give them the power of knowledge and put the trust and control back in their hands. The patient finds confidence in understanding their situation, thus allowing for a better experience overall.
Had my mom been able to quickly and easily access her diagnosis information, she would have found comfort in her ability to explain her diagnosis. She would have regained some of the control she had lost the moment the word “cancer” came out of her doctor’s mouth.
My mother’s kidney removal surgery went well. Her kidney has been sent off to Pathology and we are patiently waiting further results. Her doctors are optimistic with her prognosis, as are we. Recovery has been a bit of a different story. Although she was up walking and working on breathing exercises a few hours following surgery, the two days after she regressed. She had several tests during that time, including an EKG, X-Rays and a CT Scan. I can’t help thinking how easy and less stressful things would’ve been if she could’ve reached for her phone to access her results, rather than chased after the nurses. For now, we’ll settle for a speedy recovery and the green light to bring her home!