Kimberly’s Story and the Power of Pathology 2.0

Kimberly Jewett is a 37 year-old mother of 2 and a two-time breast cancer survivor. Her first diagnosis was at age 31 and her second diagnosis came four years later. You can read her journey here.

During this journey she has defined herself as a patient advocate, testifying before the FDA on behalf of patients, creating a program called “Thoughtful Thursdays” and works tirelessly to share her story to motivate and empower people to make better decisions in their healthcare journey and uses her consulting business to align cancer non-profit organizations with companies to secure funding and development for their patient centered programs.

Kimberly believes that by sharing her story as a two-time cancer survivor, she will empower others to be advocates in their healthcare decisions.

Her six word story: Strong. Dedicated. Inspirational. Hopeful. Energetic. Passionate.

I first “met” Kimberly on Twitter @2XBCSURVIVOR76 through this blog. We conversed by phone within a few days and a few days later met in person at CAP ’14 in Chicago. The power of social media and Pathology 2.0.

Sadly, despite hearing for a decade and a half that pathologists are in a unique place in medicine to serve as patient advocates and perhaps some of the most adapt at saying “every number is a patient”, we as a specialty and society have not been patient advocates. Sure there are some examples of dedicated, energetic, caring pathologists who go above and beyond to care for those who are in underserved areas or do not have access to care. The CAP Foundation has made it its mission over the years to do so. But I think most of us have missed the mark both in our practices and at a grassroots level for advocacy and beyond.

Several years ago at a CAP Futurescape conference I spoke about my experience stopping at a Starbucks in Washington, DC on my way to work. Every Thursday a group of 12-14 women would meet and I would overhear discussions about their surgeries, chemotherapy, tumor markers, margins and lymph node status.

When I finally got up the nerve to ask who was in the group, they all proudly said they were members of a weekly breast cancer support group. Then they asked me what I did. When they heard I was a pathologist they all immediately retrieved their pathology report from their purses and started asking questions.

Questions, such as, “Why does my report say “ER” and her report says “estrogen receptor?” and one says “positive” and another “75% positive”” or “What is Ki-67 and why doesn’t my report have that on there?” I did what I could to try to answer their questions but there were 12 of them and 1 of me and limited time.

It was a missed opportunity to be a patient advocate and put pathologists in front of patients. They were left to their own devices to decipher this information on their own. Their providers apparently did not do so, from multiple hospitals and healthcare organizations in a metropolitan area.

We as pathologists can be patient advocates and it is time to do so on a broad scale. We can provide information beyond the report and provide a valuable service to the patient and ourselves.

Patients such as Kimberly. And millions of others.

It is time for pathology and pathologists claiming we are patient advocates from behind the microscope and under the laboratory information system. We need to make some serious reforms here.

It may be a skill set we need to teach or learn for some and perhaps even a bit uncomfortable for others.

In my mind, I have been a technology advocate, pathology advocate and industry advocate but have missed the mark from my soapbox here to be a patient advocate more directly. While I try to make the case and show the excellent work being done by tens of thousands within our specialty and industry to improve patient care, my voice as a patient advocate has not been heard directly. Until now.

We can all learn something from passionate patient advocates like Kimberly Jewett. She reminded me why I went to med school and wanted to be a doctor.

In the coming months look for more stories about patient advocacy.