Large scale collection and analysis of data on patients’ experiences and outcomes have become staples of successful health systems worldwide. The data collection systems go by various names — including registries, quality registries, clinical databases and clinical audits — but all collect standardized information on patients’ diagnoses, care processes and outcomes, enabling systematic comparison and analysis across multiple sites. These registries have had far-reaching effects. They facilitate public reporting, retrospective and prospective research, professional development and service enhancements. They reveal variations in practices, processes and outcomes, and identify targets for improvement. Nevertheless, few registries have realized their full potential.

Many registries have not caught up with the digital era, continuing to rely on manual data entry (and often double entry), which is tedious, expensive and prone to error. The data may be restricted to a small number of uses, rather than being used for multiple purposes. These registries also have limited patient involvement in their design, oversight or operations. Patients do not usually have access to the data collected (even when it is about them) or opportunities to add data outside medical encounters. This means they cannot use the data to support self-management or shared decision making.

With Moore Foundation funding, the Association of American Academy of Hospice and Palliative Medicine and its partner organizations, the Center to Advance Palliative Care, the National Palliative Care Research Center, the Global Palliative Care Quality Alliance, and the Palliative Care Quality Network will set out to improve the current registry system for people with serious illness, bringing clarity to the field regarding data collection with the goal of developing a system that works for, and with, the patient. Such a system would be designed to operate at three levels — improving care for individual patients in real time, improving the quality and value of services offered by clinical programs and improving research. In addition, the information can feed into public reporting systems for consumers and inform policy.

Read the full press release here. This work is part of the patient care program's work in serious illness care and improving the care for people living with multiple chronic conditions and limitations in daily functioning.


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