I don't know one person who chooses patient advocacy as a career path. Most always, it chooses you.
I'm an example. Blessed for decades with a healthy family, I was blissfully ignorant of how an illness or event can change your life forever. As a television news and medical reporter for more than 20 years I'd interviewed many people with medical challenges. But my true "medical awakening" came in 2005, when my then-healthy father fell down the stairs and needed surgery on his neck. The surgery went well, but complications, including an infection, would eventually take his life six months later. As dad's only daughter I'd assigned myself the job of watching out for him in the hospital. His death ultimately sent my life along a new path: I wanted to help other families have more informed medical experiences.
I started by helping pass two patient safety laws in my home state (RI) went on to national policy work with NQF, CMS, and AHRQ. Wanting to help non-medical people understand key realities, risks and opportunities, I wrote a book with stories and simple analogies to drive home what's at stake. I also created a tool for patients that would bring them a measure of comfort and control when they're stuck in a hospital bed – something that had been sadly missing for my father.
Within my policy work, I found patient voices were often under-represented in the room. With funding from the Partnership for Patients, I was able to run a workshop equipping a dozen patient advocates from around the country with video-recorded presentations that would launch them into new speaking opportunities. This was a first step toward my co-founding the Patients' View Institute - a national platform where patients could have a more cohesive voice and more impact on the quality of care they receive. Over 5 years, we've listened to more than 1,250 patient stories, told the most impactful on stage to national and international audiences, and carried their top line message loud and clear: patients want to be listened, to, respected and cared for.
I've been thankful to meet leaders of organizations already delivering on this. They're driven by optimizing the patient experience of care, and have reverse-engineered their process to deliver it. I love to tell their stories.
There are more particulars on my LinkedIn profile. Below are highlights of my advocacy journey.
SEPTEMBER 2018: Pat returns to Doha, Qatar, for keynotes on shared decision-making for the Ministry of Public Health. She conducts presentations that illustrate the need for a shared mental model between patients and providers
AUGUST 2018: Having reviewed 1250-plus patient stories and realizing the clear mandate within them, Pat launches Patients’ View Partners (PVP), narrowing her focus to those projects that best utilize her passion for advancing compassionate, more functional, human-centric care.
JULY 2018: Sue Hassmiller (in charge of nursing excellence at RWJF), Pat, and other members of an informal “Compassionate Care Collaborative” (C3) meet to strategize and advance potential alliances.
MAY 2018: Pat is installed as Chair of the NBME Public Stakeholder’s Committee.
APRI 2018: Pat is brought in by the Hamad Medical Corporation (HMC) in Doha, Qatar, to speak about patient engagement strategies to HMC staff, and conduct workshops on the power of Story in fostering a more aware, compassionate, human-centric approach to care.
DECEMBER 7, 2017: Pat hosts PVI’s third annual PV Impact Awards in Washington, DC, welcoming five winners on stage including the Hope Award (advancing understanding of adolescent and behavior health issues), as well as the family of PVI’s first-ever Lifetime Achievement Award recipient.
NOVEMBER 2, 2017: Pat travels to NYC to meet with Sue Hassmiller. Sue, in charge of nursing excellence at the Robert Wood Johnson Foundation for 20 years, had had a life-changing event with the tragic death of her beloved husband. Pat and Sue realize they are deeply aligned in their focus on compassionate care. They start looking for ways to advance the infusion of compassion more consistently into education, practice and policy.
JUNE 1, 2017: PVI delivers report to the Jewish Healthcare Foundation, including insights and analysis from 100 patient and family stories of teen/adolescent behavioral health and substance abuse issues.
MARCH 2017: PVI completes a 32-month consulting project with the American Institutes for Research funded by the Robert Wood Johnson Foundation, the Gordon & Betty Moore Foundation and the California Healthcare Foundation, whose goal is to re-design healthcare performance metrics to be more patient and family-centered.
MARCH 2017: After two years on the National Board of Medical Examiner’s (NBME) Public Stakeholder’s Committee, Pat is voted in as Member at Large of NBME Executive Board.
FEBRUARY 2017: PVI is awarded grant from the Jewish Healthcare Foundation, gathering stories from families that address gaps in care in order to advance its Adolescent Behavioral Health Initiative.
DECEMBER 2, 2016: PVI holds its second annual Patients’ View Impact Awards in Washington, DC with the Leapfrog Group; also names winner of PVI’s first annual Partners in Healing Award, and a Patient Champion Award.
DECEMBER 2, 2015: PVI hands out its first PV Impact Award, to Rick Stone, who submitted a moving video about how the hospital care team handled his father’s last days.
OCTOBER 2015: PVI is accepted as a member of the National Quality Forum.
JANUARY 2015: PVI obtains its 501 ( c) (3) non-profit status from the IRS.
JANUARY 2014: Pat Mastors along with Diane Stollenwerk (then a VP at the National Quality Forum), who had met at the PWP Summit, begin fleshing out the “napkin strategy” they’d first discussed in the Kansas City airport sixteen months prior. They work through the year to organize a mission and plan, and launch a website.
DECEMBER 2013: Institute for Healthcare Improvement’s Annual Forum, Orlando, FL: with funding from the Partnership for Patients, Pat organizes opportunity for a dozen patient advocates to present their prepared presentations and have them professionally video recorded and critiqued. It was an “aha!” moment to realize that thousands of additional effective patient voices are needed, all across the country.
MAY - JUNE 2013: Pat’s then 26-year-old daughter Jess is struck with Guillain-Barre Syndrome (GBS), a rare and paralyzing nerve disorder. In the ensuing weeks, Jess mercifully escapes the worst effects (months on a breathing tube in intensive care), and fully recovers. The experience leaves Pat grateful for having had the knowledge and capacity to be an advocate for her daughter. However she is struck by an awareness that many families do not have the opportunity to be present or speak up effectively on behalf of their loved one. Pat begins outlining a framework for an organization that would embrace and speak cohesively on behalf of all patients.
SEPTEMBER 2012: Partnership With Patients (PWP) Summit in Kansas City, MO: a group of patient advocates gathers, forging relationships and brainstorming ideas about how patients could work together toward positive change in health care. Then life—family, jobs, obligations– reclaimed our time, energy and bandwidth.