Douglas Kamerow is senior scholar at the Robert Graham Center: Policy Studies in Family Medicine and Primary Care, and associate editor for The BMJ, where this tribute originally appeared. He chaired the CFAH board of trustees from 2007 to 2011.
One definition of a hero is a person who displays courage in the face of danger. Another is one who is admired and seen as a role model. Jessie Gruman, a patient and patient advocate extraordinaire, who died on July 14, fitted both these descriptions perfectly. While dealing with five serious cancers throughout her life, she kept a laser focus on discovering and describing the process that she and many other patients with serious illnesses go through, so as to create useful tools and guidelines for all patients. She did it with admirable grace, humor, wit and wisdom.
Gruman founded the Center for Advancing Health (CFAH) in Washington, DC, in 1992, with support from several foundations. During its early years, CFAH focused on the importance of health related behaviors, raising the visibility of the role of behavior in health and advocating for the importance of health behavior research. One extraordinarily important achievement during that period was the creation of the Health Behavior News Service in 1995. The service prepares news accounts of research and systematic reviews on important behavioral health topics for journalists. For years it was a free subscription wire service for science and medical reporters; now it is available to all on the web. The service has facilitated broad dissemination of behavioral research that otherwise would have been relegated to dusty library shelves.
Influenced by her personal history of numerous contacts with doctors and hospitals for cancer care, Gruman could have been content to be what she once described to me as a "professional patient," serving on boards, giving speeches, and writing about her health care experiences and the lessons she learned from them. She did do some of that, and she wrote especially movingly and perceptively about her most recent (and ultimately fatal) cancer. From her writings, I learned a lot about serious illness, such as that you ultimately cannot hurry healing, even if you work hard at it; that health information technology has improved access to care and information, but when you are seriously ill you may not have the energy to take advantage of it; and that serious physical illness impairs judgment and decision making.
But, early on, Gruman moved beyond her individual experiences to search out and categorize lessons learned by others...continue reading full post on The BMJ