Voices Across America

For John – putting patients at the heart of research

Kathy

State: Missouri
Congressional District: MO05

Find me on
Facebook

Diseases

Cancer

Issues and Challenges

Kathy has encountered: Caregiving, Discrimination (nonmedical), Transparency in Health Care

My Story

Once my husband, John, was diagnosed with colon cancer, our lives became a whirlwind of treatment options, symptom management, and evaluating side effects. Much of the information from doctors on risks, side effects, and clinical trial options was difficult for a non-medical person to understand. 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 the knowledge I struggled to learn 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 are written and trials are 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 do not want to comply with the parameters of the study, it’s that they do not always understand how to comply. Including an advocate, with the patient perspective, can help to alleviate misunderstandings and promote clarity.