A Lesson From Patients, written by Tammy Smith Thompson, NCARB, EDAC

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As the Institute continues to expand its reach, I have been fortunate to participate in a number of opportunities in which I have learned from patients. Earlier this year, I attended “Hospitals and Communities Moving Forward with Patient- and Family-Centered Care: An Intensive Training Seminar” hosted by the Institute for Patient- and Family-Centered Care (IPFCC). This seminar, which is offered twice per year in various locations, was designed on a smaller scale than IPFCC’s annual international conference. With about 300 attendees, this seminar is the ideal environment for its participants (comprised of healthcare executives, senior leadership and other administrators, clinicians, healthcare professionals, consultants, innovators, patient and family leaders, patient experience specialists and other stakeholders in the healthcare system) to engage in meaningful dialogue on the improvement of the patient and family experience from a wide range of perspectives.

As a patient advocate, I was particularly moved by a session entitled “Learning from Patient and Family Stories.” This plenary session enabled all seminar participants to listen to a diverse cross section of personal accounts by patients and their families of memorable healthcare experiences. I thought the stories were invaluable, particularly for professionals who are in a position to make decisions that influence the patient experience, but may not have regular access to patients in order to learn firsthand about their needs. With representatives from many different organizations and professions in the room (including over 100 nurses, 25 physicians, 40 patients and family members from 100 organizations across the U.S and abroad), I am certain that the messages taken away from this session were quite diverse. I left with the following messages from their stories:

1. Patients want to be treated as individuals, with consideration of who they are outside of the medical conditions that bring them in for treatment. Whether a newlywed, a business professional, a mother or grandparent, the patients made it clear that the normalcy of their lives mattered. They wanted the caregivers to respond not only to their medical conditions, but also to their personalities that make them individuals, not numbers. One patient felt most comfortable when she was able to bring her work in during treatments.

2. Patients were equally, if not even more concerned about the family members who were their partners in care. They wanted these important team members to be well-informed, comfortable, and treated with respect. When reflecting on the kindness shown to his new bride, one patient remarked, “I knew that I was dealing with people who were not just looking after me, but the ‘rest of me’.”

3. Patients appreciate due diligence performed not only by front line medical staff, but also from other staff members who may have an impact on their care. In the words of a patient, “When you pick up that file, it is just as important as when the surgeon picks up the scalpel, because until you do your job, he can’t do his[job].”

These messages have been echoed in my interviews with patients and participation in patient focus groups. Later this year, we will have the opportunity to explore design strategies for engaging patients and their families. Our Patient Experience Simulation Lab, which will be introduced at the 2012 Healthcare Design Conference, will enable patients and patient advocates, clinicians, other healthcare stakeholders and designers to gather in small groups inside a full-scale model of an inpatient room to discuss common design decisions that create obstacles for patients and to brainstorm for solutions. We hope you will join us for this exciting learning experience. In the meantime, let’s all keep our eyes and ears open for the opportunity to learn from patients and their families!

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