Patient-Centered Care: How to Involve Patients in Research and Dissemination

Patient-centered care involves thinking about the outcomes that are important to the patient, such as the health status achieved, the process of recovery, and the maintenance of health after therapy, says Ruth C. Carlos, MD, MS, from the University of Michigan and ECOG-ACRIN Cancer Research Group. But in order to understand what outcomes are important to patients, one must ask them directly, which is where patient engagement comes in.

Patient engagement involves initiating and maintaining partnerships between researchers and stakeholders (patients/patient advocates); understanding, using, and optimizing the patient perspective across all phases of research; sharing and using what is learned from patient partnerships; and training patients how the research process works. Carlos proposes these actions for patient engagement off of the Patient-Centered Outcomes Research Institute (PCORI) principles of trust, honesty, co-learning, transparency, reciprocal relationships, and respect.

Both patient-centered care and patient engagement are important for comparative effectiveness research (CER), where there is a direct comparison of two or more existing imaging tests or strategies to determine what works best for certain types of patients and yields the maximum benefit with minimal risk, notes Carlos. These research studies are necessary to provide optimal long-term health to patients and to shift the focus from short-term outcomes to long-term outcomes.

How to involve patients in research planning and studies

For anyone looking to involve patients in research planning and studies, Carlos says it is necessary to understand the barriers that exist to getting involved. For example, patients may feel inadequate to help design research studies, they may feel frustrated that the research process takes such a long time and is very lengthy, or that research is too time consuming based on other life constraints. However, through patient involvement in planning research, there are notable benefits like enrollment and retention improvement, dissemination of results is more meaningful, and there are improved patient outcomes. There are many more individual benefits that each research project can point out how patient involvement helped a certain study, says Carlos. In order to show true partnership with patients involved in the research design and dissemination, it should be noted that research partners should receive compensation that reflects their level of involvement, the same as other members of the team, she says.

How to involve patients in editorial boards and peer-reviewed journals

Bruce J. Hillman, MD, from the University of Virginia and editor-in-chief with the Journal of the American College of Radiology (JACR), presented on the success the journal has had with two lay patient advocates as associate editors. He said the editors are involved in JACR strategy development, writing articles about the patient perspective for the JACR blog, and help select patient-friendly lay abstracts to be written with the editors’ help. Additionally, this approach to improving patient access to research and transparency has led to the editors peer reviewing selected articles and increasing the journal’s involvement in social media. Overall, Hillman encourages other medical journals to involve patient representatives in meaningful journal activities to help improve patient’s understanding of their imaging care.

*These topics were discussed at RSNA 2017.