Engage patients in research – for John
Issues and Challenges
Kathy has encountered: Access to Expert Providers, Insurance Issues, Geography, Medical Discrimination
I was in Paris to run the Paris Semi. It’s their annual half marathon. It was a cold, rainy and windy day. My husband, John, who always saw me off at the start of my runs, was not feeling up to going out. The next day was beautiful but he still didn’t feel much like strolling. Something was wrong. We set up an appointment with his doctor for the day after we returned to Kansas City. He was scheduled for several tests, including a colonoscopy. That had to be scheduled the following week because he had been taking a baby aspirin and had to be clear of that for a week. We got a call late Friday from the doctor telling us that the CT showed that it was not cancer. She wanted us to go into the weekend knowing that. That was our last cancer-free weekend.
On Tuesday, John had the colonoscopy and the doctor told me that he saw a tumor that he didn’t like the looks of and had taken a biopsy. The next day it was confirmed to be cancer. Our lives became a whirlwind of treatment options, symptom management and evaluating side effects. I searched the internet, joined Facebook colon cancer groups and talked to other survivors and co-survivors.
John died two years ago. I wanted to honor his fight by sharing my knowledge to help others. I found PIVOT (Patient and Investigator Voices Organizing Together). It allows me to bring the patient voice and perspective to cancer scientists. Many grants are beginning to require an advocate to bring the patient voice to clinical trial design and materials. If materials were written and trials were designed with the patient perspective, not only will it help patients, it will also help researchers. Lack of understanding and clarity on how the clinical trial works and what is required, contributes to noncompliance. It is not that patients don’t want to comply with the parameters of the study, it’s that they don’t always understand how to comply. Including an advocate with the patient perspective can help to alleviate misunderstandings and promote clarity.
My Motivation and Inspiration
My husband John