Bringing the Power of Patient-Reported Outcome Measurement to Community Cancer Centers

Patient-reported outcomes (PROs) reflect health-related information that only patients can know and communicate to their care teams, like their symptoms (eg pain or fatigue) and quality of life (including physical and/or social function). In cancer care, PROs are particularly important as patients frequently experience debilitating symptoms or decreased quality of life related to the side effects of various treatments. Consequently, the past decade has seen clinicians and clinical researchers place significant emphasis on discovering and sharing best practices for collecting PROs in clinical care and using this information to improve patient-clinician communication and health care quality.  

Information from PROs can be useful across the entire cancer care journey. For example, patients’ answers to questions from PRO measures (or PROMs for short) can help clinicians prioritize health issues or outcomes that the patient is most burdened with or dissatisfied by. This makes the patient-clinician communication more effective and helps the clinician tailor the treatment plan to the patient’s needs. Furthermore, patients’ responses to PROMs can help ensure that unmet needs are identified and addressed.  

PROMs that are collected over time can be useful for patient monitoring and safeguarding during recovery, often alerting caregivers to problems early on, which results in timely referrals or other adjustments in care. PROMs are also excellent tools for care planning and decision making. When PROMs are used, care plans are more likely to be aligned with patient preferences and patients are better able to be meaningfully involved in decision making processes. Additionally, PROMs data can be aggregated and used to compare health care providers and systems to inform quality improvement and support integrated care. Finally, PROMs are an excellent means to monitor population health and patient outcomes longitudinally.

PRO Measurement + Low-Resourced Community Cancer Centers

Currently, Black women are significantly underrepresented in PRO data collection, despite evidence that participation in PRO data collection is associated with improved patient outcomes during cancer treatment and survivorship. Most evidence on the benefits of PRO participation specifically in breast cancer is based on White women who typically receive care in academically affiliated, highly specialized cancer care clinics or centers.

To address this access gap, the National Cancer Institute funded a 4-year project with the primary goal of increasing the engagement of Black women with breast cancer in PRO data reporting. To achieve this goal, an existing mobile-friendly web-based PRO data collection platform (called “imPROVE”) is being tailored to study barriers and facilitators to successful implementation in 5 community cancer centers across the United States. 

A stellar team of co-investigators has been brought together, representing nationally and internationally renowned experts in PRO implementation, health care disparities, medical informatics, breast cancer care, quality improvement, community health, and qualitative and quantitative research methods. The Association of Cancer Care Centers (ACCC) also recognizes the importance of improving PRO data collection and has helped with identifying community cancer centers serving a high proportion of Black women with breast cancer as partners in this project. 

As part of the foundational work for this study, in-person visits have been conducted at each of the 5 study sites to observe their workflows and build relationships with the clinical and administrative staff. In the coming months, focus groups will be conducted with patients as well as clinical and administrative staff at each site. Additionally, community leaders local to each study site will be interviewed to gain insights into additional factors that may drive engagement with PROs by Black women with breast cancer. Following this, workflows will be developed and refined to then launch PRO data collection via imPROVE. The launch of imPROVE will be staged so that the subsequent study sites are able to learn from the implementation take-aways from the prior site. 

Looking Forward

This is the beginning of the journey to unlock the power of PROMs and improve care for Black patients with breast cancer. Each of the 5 community cancer center study sites have fantastic local champions, engaged care teams, and present unique challenges and opportunities. Please continue to follow along with the progress of this study to learn important lessons that can be shared with other community cancer centers to accelerate the successful implementation of PROMs for Black patients with cancer nationwide. 

Maria Edelen, PhD is a quantitative psychologist focusing on clinical health research, based in the Department of Surgery at Brigham and Women’s Hospital in Boston. She serves as the associate director of the Patient-Reported Outcomes Value and Experience (PROVE) Center in Boston. Dr. Edelen’s expertise is in psychometric methodology and health policy research, particularly in the development and implementation of patient-reported outcomes.

Manraj Kaur, PhD (She/Her) serves as an investigator and the lead faculty for research and innovation at the Patient-Reported Outcomes, Value, and Experience (PROVE) Center in Boston. She also holds a cross-appointment at Harvard Medical School, where she is dedicated to incorporating patient perspectives into clinical decision-making and quality improvement. Specializing in patient-reported outcome measurement, Dr. Kaur focuses her research on enhancing person-centered clinical care, particularly among minority and underserved communities.