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A Reflection of Patient and Family Engagement through the Lens of an Advocate

Posted By Administration, Tuesday, March 4, 2014
Updated: Friday, June 6, 2014
This is the second in a series of posts from patient advocates affiliated with the Partnership for Patients Patient and Family Engagement Network being published in recognition of Patient Safety Awareness Week 2014.

by Becky Martins

My advocacy spirit derives from the days when I was driving a family member 150 miles round-trip, three days a week, to dialysis treatments. I spent countless hours at the unit visiting with patients and their families. It was through their stories that I learned of the many challenges that patients living with chronic illness face. It was by their example that I learned of the resilience of the human spirit to face health and related challenges head-on. The unit was my classroom, and my teachers were the patients and families, along with the unit staff who cared for them.

Becky Martins

How did I transition from a family advocate to a patient advocate? The dialysis unit social worker approached me with a request: there was an elderly patient halfway into my commute who didn’t have transportation to the unit. It was a bit out of my way, but, could I help? It was that simple: an ask by a member of the care team, and a need met by a family member. I was encouraged to get involved and invited by a local health care organization to join their executive board as a patient and family representative. In 1997, I received the Board of Trustees Service Award for 10 Years of Service. That same year, the National Patient Safety Foundation (NPSF) was founded.

In November 1999, the cover of the Wall Street Journal featured the Institute of Medicine’s report, To Err Is Human: Building a Safer Health System. While the 1980s and ‘90s were about access and affordability, the millennium brought patient safety to the forefront.

The following year, I was introduced to the leadership at NPSF. Ilene Corina, Jennifer Dingman, Mary Foley, Roxanne Goeltz, Debra Malone, Patti O’Regan, Arlene Salamendra, Ralph Speken and I were among those later invited to join their first patient and family workgroup. We were a small group of volunteers impassioned with the desire to partner with health care leaders for the common goal of improving health care quality. In 2002, the expanded council was included in the development of National Agenda for Action: Patients and Families in Patient Safety−Nothing about Me, Without Me. Patient and Family Advisory Council members were invited to participate on subcommittees, and our attendance at the NPSF’s annual Congress was supported through scholarships.

Today, the inclusion of the patient and family voice is being integrated into the design, delivery, and measurement of health care through the Partnership for Patients (PfP) Campaign. The PfP’s Hospital Engagement Network (HEN) is inviting patients and families to share their stories (some heartbreaking to hear, others to be celebrated), to participate on boards, in workgroups, and on advisory councils in hospitals and community-based organizations nationwide.

No one wants to see caregiving organizations succeed more than the patients and families that they serve.

Tags:  Voice of the Patient 

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