40-plus Health Care Organizations Launch Unprecedented Effort to Improve Accuracy, Timeliness of Diagnosis

Washington, DC – A coalition of more than 40 health care and patient advocacy organizations today launched a targeted effort to improve the quality of medical diagnoses, especially those that can result in patient harm. Researchers estimate that up to 80,000 deaths a year in U.S. hospitals can be attributed to inaccurate or delayed diagnoses.

ACT for Better Diagnosis™, an initiative of the Society to Improve Diagnosis in Medicine (SIDM), aims to improve the diagnostic process by calling on organizations to identify and spread practical steps to better ensure diagnoses are Accurate, Communicated, and Timely.

“Providing an accurate medical diagnosis is complex and involves uncertainty, but it’s obviously essential to effective and timely treatment,” said Paul L. Epner, chief executive officer and co-founder of SIDM. “Nearly everyone will receive an inaccurate diagnosis at some point in their life and for some, the consequences will be grave. Major improvement is needed to systematically identify how to improve diagnostic quality and reduce harm to patients.”

Each year, diagnostic errors affect 12 million adults in outpatient settings and are the most common cause of medical errors reported by patients.

Working in collaboration over several months, members of the SIDM-led Coalition to Improve Diagnosis, made up of premier national health care and patient advocacy organizations, identified initial obstacles they believe impede diagnostic accuracy, including:

• Incomplete communication during care transitions—When patients are transferred between facilities, physicians or departments, there is potential for important information to slip through the cracks.

• Lack of measures and feedback—Unlike many other patient safety issues, there are no standardized measures for hospitals, health systems, or physicians to understand their performance in the diagnostic process, to guide improvement efforts or to report diagnostic errors. Providers rarely get feedback if a diagnosis was incorrect or changed.

• Limited support to help with clinical reasoning—With hundreds of potential explanations for any one particular symptom, clinicians need timely, efficient access to tools and resources to assist in making diagnoses.

• Limited time—Patients and their care providers overwhelmingly report feeling rushed by limited appointment times, which poses real risks to gathering a complete history that is essential to formulating a working diagnosis and allows scant opportunity to thoroughly discuss any further steps in the diagnostic process and set appropriate expectations.

• The diagnostic process is complicated—There is limited information available to patients about the questions to ask, or whom to notify when changes in their condition occur, or what constitutes serious symptoms. It’s also unclear who is responsible for closing the loop on test results and referrals, and how to communicate follow-up.
• Lack of funding for research—The impact of inaccurate or delayed diagnoses on health care costs and patient harm has not been clearly articulated, and there is a limited amount of published evidence to identify what improves the diagnostic process.

The Permanente Federation, representing the Permanente Medical Groups that provide care to more than 12.2 million patients and members of Kaiser Permanente, is a member of the coalition.

“Kaiser Permanente pioneered ‘SureNet,’ an electronic surveillance program that scans the electronic medical record for potential care gaps, including delays in follow up on abnormal test results or potential drug-disease interaction,” said Michael Kanter, MD, the Federation’s chief quality officer and executive vice president, and medical director, Quality and Clinical Analysis, Southern California Permanente Medical Group.

“We currently have 54 such programs in place across Kaiser Permanente,” Dr. Kanter said, “and are committed to continuing to expand these ‘SureNets’ to improve timely diagnosis and patient safety. We are pleased to join other like-minded organizations in sharing and spreading best practices to improve diagnostic accuracy.”

The organizations behind the effort—representing clinicians, patients, health systems, researchers, and testing professionals—acknowledge that improvement will require sustained work over several years with all stakeholders engaged.

“The diagnostic process can be complex, as well as emotional and fearful, for women heart patients,” said Evan McCabe, RN, MN, WomenHeart champion and board of directors chair. “Having the right information to help mitigate the fear of the unknown is crucial. It’s important that health care providers listen to patients and have the research and other tools they need to provide answers.”

Members of the coalition are taking action to improve the accuracy and timeliness of diagnoses, naming tactics like providing online tools that help physicians recognize and avoid diagnostic pitfalls and improving medical education for new practitioners, as well as tools to support patients as they seek to get a diagnosis. They will also develop tools that empower doctors, patients, and caregivers to communicate test results in plain language.

The FY 2018 Omnibus Appropriations Act included language emphasizing that improved diagnosis is a “moral, professional, and public health imperative” and requested that “the Agency for Healthcare Research and Quality (AHRQ) convene a cross-agency working group to propose a strategy to enhance scientific research to improve diagnosis in healthcare.” The report also recommended including consideration of opportunities for public-private partnerships and the development of centers of excellence to propel research forward to improve diagnostic quality and safety.

“The diagnosis process—thinking through a patient’s clinical presentation—is a defining task for our profession, and for internal medicine specialists and subspecialists in particular,” said Ana María López, MD, president, American College of Physicians. “Critically assessing diagnostic decision-making reveals knowledge gaps, communication pitfalls, and risk for errors.”

Coalition members include:

Also participating in the coalition are federal liaisons, including the Agency for Healthcare Research and Quality, Centers for Disease Control and Prevention, Centers for Medicare and Medicaid Services, and Veterans Health Administration.

ACT for Better Diagnosis is supported by the Gordon & Betty Moore Foundation and The Mont Fund. More information is available at www.BetterDiagnosis.org. Coalition members encourage everyone to share what actions they are taking to improve diagnosis with #betterdiagnosis.

About the Society to Improve Diagnosis in Medicine (SIDM)
The Society to Improve Diagnosis in Medicine catalyzes and leads change to improve diagnosis and eliminate harm from diagnostic error. We work in partnership with patients, their families, the healthcare community and every interested stakeholder. SIDM is the only organization focused solely on the problem of diagnostic error and improving the accuracy and timeliness of diagnosis. In 2015, SIDM established the Coalition to Improve Diagnosis, to increase awareness and actions that improve diagnosis. Members of the coalition represent hundreds of thousands of healthcare providers and patients—and the leading health organizations and government agencies involved in patient care. Together, we work to find solutions that enhance diagnostic safety and quality, reduce harm, and ultimately, ensure better health outcomes for patients. Visit www.ImproveDiagnosis.org to learn more.

About The Permanente Federation
The Permanente Federation LLC (the Federation) is the national leadership and consulting organization for the eight Permanente Medical Groups (PMGs), which, together with the Kaiser Foundation Health Plans and Kaiser Foundation Hospitals, comprise Kaiser Permanente. The PMGs employ more than 22,000 physicians, approximately 90,000 nurses, other clinicians and staff, and provide care to over 12.2 million Kaiser Permanente patients and members. The Federation works on behalf of the PMGs to optimize care delivery and spread Permanente Medicine – medicine that is patient centered, evidence based, technology enabled, culturally responsive, team delivered, and physician led. The Federation, based in Oakland, California, fosters an open learning environment and accelerates research, innovation, and performance improvements across the PMGs to expand the reach of Kaiser Permanente’s integrated care delivery model and to lead the nation in transforming care delivery.