R18HS029344

Achieving Better Cancer Diagnosis (ABCD): Identifying, Supporting, and Learning from Marginalized Patients Who Experience Delayed Cancer Diagnosis - Delays in the diagnosis of cancer are too common. For patients diagnosed with advanced stage cancers, particularly those with symptoms or findings that may represent missed opportunities for earlier diagnosis, this can be devastating.

These concerns are complicated by the nonspecific nature of cancer symptoms, hindsight bias, controversies around over-diagnosis and over-testing, and now delays in screening and care due to COVID. Some patients experiencing a delayed diagnosis may face additional challenges resulting from social determinants of health, racism, language barriers, or inadequate health insurance.

Prior studies examined system factors associated with delayed cancer diagnosis, but progress on reducing these delays has been elusive. The patient voice has been missing, even though it is likely the one voice with the most to say about how the delay occurred and opportunities for improvement.

In our prior work, we learned patients are frequently aware of problems in their care but hesitate to speak up for fear that it might adversely affect their care. Silence around the delayed cancer diagnosis extends to all members of the healthcare team, given the fear of malpractice litigation and the ingrained resistance to addressing problems in care transparently.

We propose a Diagnostic Center of Excellence (DCE) that will seek out and transparently address cases and causes of delayed diagnosis of cancer by bringing together national experts on diagnostic safety (Brigham and Women's Hospital/Harvard Medical School) and on Communication and Resolution Programs, or CRPs (University of Washington). CRPs are systematic processes for responding to problems in healthcare with transparency, accountability, and learning.

The project will target delays and disparities for historically marginalized patients with breast, lung, colorectal, and prostate cancer, each of which has recommended screening guidelines.

The project encompasses the following specific aims:

Specific Aim 1: Create a DCE to design and implement a program to identify and learn from patients who experienced delays in diagnosis of 4 leading cancers. We will partner with existing organizational resources and help to optimize them by bringing together multiple streams of data to facilitate real-time identification of patients, particularly those from marginalized populations, who may have experienced a delay in the diagnosis of cancer.

Specific Aim 2: Engage and learn from patients who have experienced delayed cancer diagnoses. We will identify 240 recently diagnosed cancer patients at Dana Farber Cancer Institute and Fred Hutchinson Cancer Center. Using a novel patient advocate intervention, we will conduct serial interviews to develop trust and learn about potential missed opportunities for earlier diagnosis. We will then analyze these cases for improvement opportunities using existing validated tools.

Specific Aim 3: Implement and evaluate generalizable interventions to improve the cancer diagnostic process. Our advisory committee will review ideas to improve cancer diagnosis emanating from Aims 1 and 2. We will test promising system solutions using Plan-Do-Study-Act (PDSA) cycles. We will develop a robust, multifaceted Improving Cancer Diagnosis Communication Toolkit designed for dissemination.

By engaging patients and families who have a front row seat to the full diagnostic process, we will harness novel insights to improve timely diagnosis of cancer.

Brigham & Womens Hospital

TO SUPPORT RESEARCH AND EVALUATIONS, DEMONSTRATION PROJECTS, RESEARCH NETWORKS, AND MULTIDISCIPLINARY CENTERS AND TO DISSEMINATE INFORMATION ON HEALTH CARE AND ON SYSTEMS FOR THE DELIVERY OF SUCH CARE INVOLVING: (1) THE QUALITY, EFFECTIVENESS, EFFICIENCY, APPROPRIATENESS AND VALUE OF HEALTH CARE SERVICES, (2) QUALITY MEASUREMENT AND IMPROVEMENT, (3) THE OUTCOMES, COST, COST-EFFECTIVENESS, AND USE OF HEALTH CARE SERVICES AND ACCESS TO SUCH SERVICES, (4) CLINICAL PRACTICE, INCLUDING PRIMARY CARE AND PRACTICE-ORIENTED RESEARCH, (5) HEALTH CARE TECHNOLOGIES, FACILITIES AND EQUIPMENT, (6) HEALTH CARE COSTS, PRODUCTIVITY, ORGANIZATION, AND MARKET FORCES, (7) HEALTH PROMOTION AND DISEASE PREVENTION, INCLUDING CLINICAL PREVENTIVE SERVICES, (8) HEALTH STATISTICS, SURVEYS, DATABASE DEVELOPMENT, AND EPIDEMIOLOGY, (9) DIGITAL HEALTHCARE RESEARCH, AND (10) PATIENT SAFETY RESEARCH, INCLUDING HEALTHCARE-ASSOCIATED INFECTIONS. IN SUPPORT OF THIS RESEARCH, THE AGENCY HAS A SPECIAL INTEREST IN HEALTH CARE AND ITS DELIVERY IN THE INNER CITY, IN RURAL AREAS, AND FOR PRIORITY POPULATIONS (LOW-INCOME GROUPS, MINORITY GROUPS, WOMEN, CHILDREN, THE ELDERLY, AND INDIVIDUALS WITH SPECIAL HEALTH CARE NEEDS).

93.226 - Research on Healthcare Costs, Quality and Outcomes

Division of Grants Management [HHS - AHRQ]

Center for Quality Improvement and Patient Safety (CQuIPS) [HHS - AHRQ]

Boston, Massachusetts 021156110 United States

Single Zip Code

Diagnostic Centers of Excellence: Partnerships to Improve Diagnostic Safety and Quality (R18) (RFA-HS-22-008)

Amendment Since initial award the total obligations have increased 285% from $996,882 to $3,833,028.