A Patient Perspective

by Kommah McDowell

As a patient, advocate, and a founding member of City of Hope’s Patient and Family Advisory Council.  This past weekend I had the opportunity to attend my first Institute for Healthcare Improvement (IHI) Forum in Orlando, FL.  One of the reoccurring themes at the conference was the importance of patient and family-centered care (PFCC) for clinicians and for clinicians to go back to their original desire of getting into medicine, to take care of people.  As a patient who was degraded by a primary care physician while being misdiagnosed for seven months, I appreciate the focus of PFCC for all clinicians.  As a professional patient advocate who has experienced lives lost because patients were afraid to speak up for fear of doctor-retaliation, I truly appreciate the need to include the patient’s voice in their care process.

In 2005, I was eventually diagnosed with late stage triple negative inflammatory breast cancer and statistically given a five percent chance to survive two years and if survived, I would not be able to have children.  Now, eight years later I am married (8 years) and we have a wonderful son who is now four years old.  Fortunately, I was a member of my care team at City of Hope and my family and I had a voice in my treatment process, which I believe was a critical component to my successful prognosis.

In my experience as a patient and family advisory council member, infusing PFCC into clinical practice will require partnerships with patients who are willing to appreciate their experience, but be able to look beyond their personal experience to the well-being of all patients. Clinicians and administrators must allow an opportunity of open communication and encourage change within their hospitals or institutions.

At the IHI Forum, I attended the Patient and Family Skills Development Dinner.  This Dinner was a great opportunity for PFA’s to develop suggestions for IHI for future Forums, if utilized properly.  I suggest a session on “Where does Me, Mine, and I fit in patient advocacy?”  The suggested session would teach how to be effective PFA’s that could participate in the shift to PFCC and not just beat their own drums.

The Always Event was a great workshop and could be very effective if utilized.  Fortunately, City of Hope uses Rapid Improvement Events (RIE) to make great change in the institution.  In my experience as a participant of several RIE’s, change in large settings is only possible when there is by-in from the top down and everyone demonstrates a vested interest in the change.  City of Hope has been very successful in making great improvements in various aspects of how they do business from the bedside to billing.

Finally, a Call for a More Compassionate Healthcare System was the best workshop to me that should have been highlighted for clinicians.  The Schwartz Center is genuinely honoring Kenneth Schwartz’s life through their work on compassionate care.  They are a great organization to model after.

Kommah McDowell is a survivor, speaker and is the founder and Executive Director of the Kommah Seray Inflammatory Breast Cancer Foundation (KSIBCF).  KSIBCF helps provide resources and assistance to cancer patients in treatment for any type of cancer by covering the cost of prescriptions, co-payments, utility bills, housing cost and more.

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