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Patient Advocate

How do the goals of the PROTEUS Consortium align with your professional interests?

Over 20 years ago, in my early 20’s, I was diagnosed with breast cancer. My providers did a great job of removing disease but a lousy job of communicating treatment options, symptom management, and long-term side effects. Since then, I have dedicated my career to improving communication strategies and enhancing treatment outcomes for those living with cancer and their care partners. PROTEUS is a fantastic example of clinicians, researchers, and patient advocates working together on the shared goal of promoting the use of patient-reported outcomes to inform (and ideally improve) care.

How has being a part of the PROTEUS Consortium benefited your work or research?

Being part of PROTEUS has shown me that we can expect more from our healthcare team and medical administrations. It is no longer acceptable to use technology challenges, patient health literacy, reimbursement issues, or billable time as a rationale to omit PROs in research and clinical care. With creative solutions and provider buy-in, PROTEUS highlights that healthcare systems, even with limited resources, can implement PROs, and that those PROs have the potential to enhance care.

Can you share any specific examples of how you have utilized the resources provided by the PROTEUS Consortium?

I was recently working on a Quality Improvement Protocol that was tackling how oncology symptoms were being collected. The goal was to standardize processes among providers, reduce redundancy, and design clear pathways for patient care. A researcher in the group wanted to include several lengthy and redundant PROMs, but some of the clinicians on our team did not know how to interpret the findings and apply them to clinical care. The PROTEUS Practice Guide became an invaluable tool and brought the team together behind a concise set of PROMs, with targeted goals and objectives, and training for providers in how to incorporate findings into care delivery.

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