Improving Care for the End of Life, Online Edition The Palliative Care Policy Center

Sourcebook : Improving Care for the End of Life : 2.6 Establishing Registries

Teams need to find patients to target for quality improvement efforts. One way to do this is to establish a patient registry from which to cull data to track how care is affected by quality improvement efforts. The easiest place to start is with a list of patients. For example, groups with computerized patient databases might search for diagnoses, severity, or some other factor. Many teams find that the best way to assemble a registry is to talk to health care providers on a unit or in a specific discipline. For instance, groups involved in improving care for heart failure patients have asked cardiologists to review their patient panel and note whether it would be a surprise if a patient were to die within the year.

Teams can begin to make improvements to the system of care while a registry is being set up. Changes can be developed and tried with the patients identified. Refinements to the changes can be made based on discussions with caregivers, patients, and families. The learning can be expanded as additional patients are added to the registry. Over time, teams can gather evidence about whether a change is an improvement to the system.

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This online version of the book Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians is provided with permission of Americans for Better Care of the Dying [ www.abcd-caring.org ] and Oxford University Press. All rights reserved.

For further information on quality improvement in end-of-life care visit The Palliative Care Policy Center [ www.medicaring.org ].

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