Engaged Patient Stories

How I Became an Engaged Patient: Interview with Kari Dudley

Kari Dudley is a founder of the Women's Health Exchange, a two-time cancer survivor and an active patient advocate on the Dana Farber Patient Family Advisory Council (PFAC).   We talked to Kari about her personal story as a patient and her experience with the PFAC, and about the Women's Health Exchange.

Kari learned valuable lessons in how to be a more engaged patient after she was diagnosed with Hodgkin's Lymphoma.  Looking back Kari says, "I put myself in the hands of the provider.  All my decisions came from them to me.  I readily accepted all the information because they were the experts." 

During her treatment, Kari underwent a transformation – from relying on the health care team to being a more engaged and informed patient. 

At first Kari wanted to be stoic, "but you can't do it all yourself.  In consultations I missed ¾ of the information discussed.  So I started to bring a friend or family member along to appointments to listen and ask questions."

Asked what advice she would give to a newly diagnosed cancer patient Kari says, "keep a notebook, and write down questions before and after the appointment.  Inevitably you forget. And don't accept jargon.  It's OK to press the pause button, and ask questions."

After completing treatment at the Dana Farber Cancer Institute, Kari didn't leave her passion for patient centered care behind; Kari has been an active member of the Dana Farber PFAC for the last three years.  She joined because it granted her the opportunity to have an impact on the experience of other cancer patients.

The PFAC provides insight and feedback to the Dana Farber towards improving patient satisfaction and safety.  Its members include hospital clinical and administrative leaders and a blend of caregivers and patients in all stages of care.  Dana Farber was among the first hospitals in Massachusetts to establish a PFAC and can point to several improvements in patient experience based on PFAC involvement.    Recently, the Massachusetts Department of Public Health issued regulations requiring all hospitals in Massachusetts to have a PFAC in place by September 2010 and to have already posted their PFAC plans on their websites.

Kari feels that PFACs are most successful when the patient is engaged as a volunteer at every opportunity in the hospital. Having commitment from the senior management is also vital.  The partnership ensures best outcomes for patients.

Kari's activism on patient advocacy doesn't end with her role in PFAC.  After her first experience with cancer Kari and fellow patient advocates Martha Hayward, Magnolia Contreras, Camille Vincenti, and Yelena Wetherill created the Women's Health Exchange to conquer the fear of cancer and turn it into hope.   The Women's Health Exchange is a place for patients to have open conversations, exchange information and share experiences.   Kari and Martha have created tools and a space for patients to empower themselves in their own health care through early detection and open communication.  To learn more, visit www.womenshealthexchange.org.

Back to Top