This post was contributed by Ruth Carlos, MD, FACR, project lead of “Defining a Roadmap of Patient Engagement in Imaging CER” and a professor of radiology, division of abdominal radiology, University of Michigan Health Services.
Once limited to serving as research subjects and observers, patients and their advocates can now engage with imaging researchers in the planning, execution and analysis of clinical trials.
The ECOG-ACRIN Cancer Research Group leads in a new paradigm for imaging comparative effectiveness research (CER) where researchers engage with patients and patient advocates at every step of the process.
CER results are most valuable when relevant to clinical investigators and patient communities. Our preparation for the “Defining a Roadmap for Patient Engagement in Imaging CER” has shown that such relevance may not be common.
Many research questions are meaningful to radiologists, but not to patients or their advocates. Understanding the false-positive rate of a test is important to me. Patients want to know if a test will tell them if they have cancer, how the test might miss cancer and how many other tests must be performed to rule out cancer.
We need to better understand these outcomes and integrate them to improve our clinical trials. With support from the Patient-Centered Outcomes Research Institute, that’s what ECOG-ACRIN is doing. Patient advocates serve on our grant writing committee, workshop planning committee and as workshop team co-leads. This weekend, dozens of patients and patient-advocates will receive CER training at the ACR Learning Center in Reston (follow the related conversation on Twitter with the hashtag, #PCORIimaging).
This training can prepare patients and patient advocates to help with many tasks, such as improving our ability to recruit CER trial subjects and to describe study objectives and results in language that will help patients gain useful answers from what we find.
Our work is not just about reflecting the patient experience. It is changing the culture that determines how scientists approach clinical trials. Valuing the patient experience is helping us develop trials to benefit scientists, patients and patient-advocates alike.
How are you integrating patient input into care at your practice or hospital or into research carried out there?
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