Editor’s Note: This post was originally published Aug. 15 on the Health Affairs Blog.
Jessie Gruman: "an elegant, gracious, yet fierce warrior advocate."Jessie Gruman, founding president of the Center for Advancing Health, died on July 14 after a fifth bout with cancer. Jessie was a hero to patients, families, and health care providers for her selfless work to help people better understand their role and responsibilities in supporting their own health.
Jessie was an extraordinary soul and a pioneering activist in the person-centered care movement. She used her personal experience with illness to inspire a life’s work aimed at developing practical resources that support peoples’ engagement with their health care. She improved care and improved lives.
Jessie was first diagnosed with cancer at the age of twenty. She was thrown into a world that spoke in a foreign tongue: “medicalese.” She was expected to self-administer a complex medication regime, which she openly admits she sometimes skipped. Jessie described the hard-working health care professionals who fought to make her better all relying on her, a scared twenty-year-old, to understand what they said and implement their plan. She realized the enormous power of people who are engaged in their own health, while also recognizing the challenges to such engagement.
For most, living with serious illness is a singular task that can be all-consuming. Endless medical appointments. Good days. Bad days. Not so for Jessie. She drew from the experience of her illness and interactions with health care delivery. She amassed a unique and powerful set of insights into the needs of people and families as they interact with health care providers.
She translated these insights into practical tools and resources aimed at fostering engagement in one’s own health. For instance, she wrote about her experience navigating four cancer diagnoses and the need for policies that support patients’ and families’ increased responsibilities for their health in the February 2013 issue of Health Affairs. She also answered questions about what patients need from clinicians on Health Affairs Blog.
Jessie’s Legacy
In 1992, Jessie Gruman founded the Center for Advancing Health. The Center’s mission is “to increase people’s engagement in their health care.”
“We listen to patient perspectives. We translate what we learn into resources that help all of us participate fully in our health care and that enable policy makers and clinicians to support our efforts.”
Topics addressed by the center run the gamut from what is patient engagement, how to choose a doctor, how to recognize depression, questions to ask about medical tests, and even how to give your doctor the pink slip if they aren’t supportive of your engagement. Through the center, simple, clear, and practical information is made freely available to people, providers, payors and policymakers as they grapple with engagement and activation of people in support of their health.
Jessie Gruman’s legacy is indelible. She has forever changed the way that people like me interact with our providers. She has changed our expectations around good communication and receptivity to our questions and has established both a norm and evidence for listening to patients and families. Among the many gifts Jessie leaves us is her seminal book, Aftershock: What to do When the Doctor Gives You–or Someone You Love–a Devastating Diagnosis.
Jessie wrote of being stopped in her tracks by each devastating diagnosis: five cancers and a serious heart problem. Yet she transformed herself into an elegant, gracious, yet fierce warrior advocate. She remained centered through the end of her days on improving the health of others.
Speaking of her experience in The Washington Post in February 2007, she poignantly wrote, “It immersed me in a cold, uncomfortable reality that is familiar to anyone who has received a sudden diagnosis of serious illness. Our connections, our skills in finding information and acting on it, our abilities to cope–all of which are necessary for making the right decisions and getting the right care–feel suddenly inadequate. But through my own experience–as well as the experience of talking to more than 200 others who have faced a devastating diagnosis–I’ve discovered that people are remarkably resilient once they gather the information they need to reconstitute their immediate futures.”
The world lost a champion. I lost a hero and friend. Yet, the efforts started by Jessie Gruman will live on through the Center for Advancing Health and the many lives she touched.
A memorial honoring Jessie’s life will be held at the New York Academy of Medicine at 1216 Fifth Avenue at 2 p.m. on Sunday, October 5, 2014, in New York City.
Copyright ©2010 Health Affairs by Project HOPE – The People-to-People Health Foundation, Inc.