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National quality assessment programs usually measure and reward practices based on improving clinical processes such as re-hospitalization or infection rates. While this type of information is important and useful to clinicians, it doesn’t always take into account what is most important to the patient and families of the patient receiving care, such as the management of long-term symptoms or ability to conduct daily activities.

National efforts are underway to address this gap and develop rigorous standards for bringing the patient voice more prominently into quality assessment. In an article published online July 10 in the Journal of the American Medical Association, the efforts to introduce Patient Reported Outcomes, information on the patient, told by the patient, without interpretation, are described by co-authors Ethan Basch MD, director of Cancer Outcomes Research at the University of North Carolina, Phyllis Torda, MA, of the National Committee for Quality Assurance, and Karen Adams, PhD, of the National Quality Forum.

“Availability of reliable information about how patients feel and function will assist providers to know if they are optimizing symptom control and how they might do better, can identify practices where education or outreach could be beneficial, and may ultimately assist patients to understand which practices best manage issues related to how people feel,” said Basch.

The article describes a pathway for developing patient-reported quality measures, which was recently developed by the National Quality Forum with input from a wide range of stakeholder groups This pathway stresses the importance of including patient input, and the necessity of scientific rigor. “The best way to represent the patient’s perspective is to take advantage of a resource that, to this point, has been largely underutilized – the patients themselves. The pathway outlined in this article presents a realistic and attainable means of tapping this valuable information so it can be used to improve both care and the care experience,” said Adams.

Quality programs that already are using patient reported outcomes in the U.S. and Europe are highlighted as well. “These standards are already being put to use.” Said Torda. Her organization, the National Committee for Quality Assurance, is working with the U.S. Office of the National Coordinator for Health Information Technology and the Centers for Medicare and Medicaid Services to identify patient-reported quality measurement approaches supported by electronic health records. “In the near future, electronic health records will need to integrate patient-reported outcomes,” she said.

“Widespread adoption will involve challenges including cost, new infrastructure, and cultural change,” said Basch. “The hope is that in the future, we’ll better understand the value of care in terms of outcomes that matter to people, and can therefore be said to be truly patient-centered.”

About NQF:

Founded in 1999, NQF is a non-profit, non-partisan organization with over 440 organizational members. NQF members span the health care spectrum, including physicians, hospitals, businesses, consumer and patient representatives, health plans, certifying bodies and other healthcare stakeholders. NQF operates under a three-part mission to improve the quality of American healthcare by building consensus on national priorities and goals for performance improvement and working in partnership to achieve them; endorsing national consensus standards for measuring and publicly reporting on performance; and promoting the attainment of national goals through education and outreach programs. Learn more.

About UNC Outcomes:

The UNC Outcomes Research Program seeks to optimize cancer outcomes by conducting innovative prevention, early detection, quality of care, dissemination and survivorship research to facilitate effective dissemination and implementation of best practices across the state.

Date: July 11, 2013