Rebecca Bryson is a kind of medical super-specialist. For the last 8 years, she has had vast experience in family medicine, ophthalmology, gastroenterology, hematology, emergency medicine, cardiology (including special interests in electrophysiology and the management of congestive heart failure), cardiothoracic surgery, psychology, and pharmacology. But she isn’t board-certified in any of these, nor even board-eligible. Bryson is, rather, a patient.
Throughout her experience with a chronic illness marked by extensive complications, Bryson, who works on a team in the Pursuing Perfection initiative
of The Robert Wood Johnson Foundation
(Whatcom County, Bellingham, Washington, USA), has found that many of the challenges patients face are system problems. The obstacles largely stem from the design of the health care system, Bryson says, with the result that "patients are in the worst kind of maze, one filled with hazards, barriers, and burdens."
She divides these problems into three major areas: medical records, gate keeping, and seeing the patient as a whole person (the patient’s "medical persona," in her words). She notes that the medical-record system is "location- or process-centered, not patient-centered." With each of her 13 care providers keeping his or her own separate records, one of Bryson’s tasks is remembering "from appointment to appointment who knows what." How can medical information, and the transfer of it, be made more transparent, such that the burden of sharing information among providers is lifted from patients?
Gate keeping, originally designed to control medical costs, has now turned into a dead-end; the gate is firmly locked. When Bryson needs to see a provider, her first challenge is to make a good argument, one that will convince a receptionist to leave a note for a nurse. If the nurse is convinced, she makes the same argument again, in hopes that the nurse will leave a note for the doctor, who will, of course, have to hear the same argument yet again. This process is one that creates "delays, barriers, and hazards" for patients.
Finally, caregivers need to understand the patient as a whole, as an individual with needs and preferences. Understanding a patient’s "medical persona" might mean knowing whether they have special dietary restrictions or preferences, what their financial situation is, whether they have reliable transportation, in what language they converse most easily, and a host of other personal and social issues. Bryson stresses that the problems she has encountered are "problems with the design of health care, not with the people" who give care.
Mary Minniti, the manager of the Pursuing Perfection project, agrees. She said that hard-working health-care workers sometimes, however, take such criticisms personally, rather than reacting as "systems thinkers."
Patients make up substantial percentages of Minniti’s teams, serving as correctives to staff members’ erroneous assumptions and as "field levelers," helping to keep the focus on patient issues. Some of the challenges of having patients as team members include the need to prepare some of them for this kind of group participation, and to accommodate their schedules, which can be quite different from those of the staff. Further, "keeping the patient’s voice close to the projects at all times," says Minniti, requires a flexible infrastructure and dedicated resources — development needs that are usually underestimated.
But Minniti is confident that the effort is worth it. She affirms the unique perspectives of each patient, calling these critical to moving from "patient-focused to patient-centered care. It seems simple, but it is really a radical shift."