December 22, 2003/January 5, 2004 Focus Upcoming Student Scene Spotlight

Student Scene In Chronic Care, Perhaps the Provider Should Call the Patient Photo by Graham Ramsay In its 2001 report, Crossing the Quality Chasm: A New Health System for the 21st Century, the Institute of Medicine's Committee on Quality of Health Care in America envisions an improved health care system that is safe, effective, patient-centered, and equitable. But how would such a vision translate into reality in an environment stressed by financial demands, labor market issues, rapidly advancing technology, and the cost of innovation, all of which affect the doctor-patient interaction? Some of the answers may be found in the experience of patients as they navigate the system. Though this information is anecdotal, it often brings to light the nuts and bolts of the system, and therefore may reveal the barriers to change and best practices. The Patient's Perspective In late 2000, when Ms. R was 42 years old, she suffered a flulike illness. She recovered, but three months later developed an unexplained gastrointestinal bleed and two months after that suffered an episode of extreme fatigue. Unable to walk even a few steps, she went to her local emergency room. Over the next 24 hours and after a series of tests and diagnostic procedures, she was diagnosed with end-stage congestive heart failure due to idiopathic dilated cardiomyopathy. A diabetic since the mid-1990s, Ms. R had controlled her disease well with diet and exercise, and had always been a "proactive, engaged" patient, eager to participate in her own care. A professional who had recently returned to graduate school and was finishing up her dissertation, Ms. R entered into a health care system ill-designed to address the needs of a patient with a chronic, complicated illness, facing imminent death from a disease she had never heard of and whose origin was unknown. Recently, I spoke with Ms. R about her experience in the health care system. "I am not the average patient," she told me. "I am totally invested in ownership of my own care. I am not afraid of the health care system, not afraid to ask questions, not intimidated by the medical profession." She has developed a close relationship with her cardiologist and health care team, which includes her family physician, gastroenterologist, endocrinologist, nephrologist, ophthalmologist, psychologist, and clinical care nurse. Early in her diagnosis of heart disease, Ms. R's cardiologist hit all the right notes. "He read me really well," she recalled. The night of her diagnosis, as her cardiologist was explaining the nature of the disease, the possible treatments, and prognosis, Ms. R started thinking about how to tell her husband and family about her condition. "When he had finished talking, I was honest with him and told him that I hadn't heard a thing he was saying. I asked him to repeat it so I could write it down, and that would help me communicate with my family. Even the language was strange--idiopathic dilated cardiomyopathy--I had never heard those words." Perfecting Care Ms. R is part of an international initiative of the Robert Wood Johnson Foundation managed by the Institute for Healthcare Improvement (IHI) called "Pursuing Perfection: Raising the Bar for Healthcare Performance." Pursuing Perfection seeks to significantly improve patient outcomes. Part of the initiative was the development of an electronic medical record, accessible by all providers caring for the patient. Prior to this universal e-record, Ms. R was responsible for making sure that every health care provider she encountered knew her relevant medical history, which was complicated and long. Though some e-records did exist, they were not compatible, and the ultimate responsibility rested with Ms. R. "That has been one of the biggest challenges, to make sure that everyone has the right information," she said. The new e-record has lifted a "great burden." When Ms. R went in for surgery this month, the surgeon and his team had her complete medical history on hand, including details on her 13 allergies. Each week, Ms. R gets a call from her clinical care nurse, who runs through a list of questions related to her chronic conditions as part of the Pursuing Perfection initiative. The paradigm shift is to have the health care system reach out to chronically ill patients, instead of the other way around, as is the case in the acute care model of medical care. Ms. R credits this weekly call with saving her life on at least two occasions, when the nurse recognized warning signs and initiated immediate treatment. Ms. R's medical treatment has been long and difficult. Despite this, she is optimistic about the health care system. "I am just so thankful," she said. "There is nothing broken about the caregivers--it is the system they have to work in that is broken. But you can't necessarily see how to fix this system until you are in the patient's position since you can't understand what you don't know." She believes that in order to improve patient care and the medical system for patients, it is imperative to get patient input in the design of that care. --Erica Seiguer, a fifth-year MD-PhD student studying economics in Harvard's Doctoral Program in Health Policy The opinions expressed in this column are not necessarily those of Harvard Medical School, its affiliated institutions, or Harvard University. Websites of Interest The IOM Health Care Quality Initiative Institute for Healthcare Improvement (IHI) QualityHealthCare.org (IHI) Pursuing Perfection Quality Health Care Program at the Robert Wood Johnson Foundation (Select Quality Health Care)

Calendar | Jobs | HMS Home | Hospitals | Back Issues | Feedback | Home