Optimizing Patient-Centered Outcomes Research: Insights from a Patient Partner
- Balancing Flexibility and Fidelity in Pragmatic Trials
- Engaging Community Partners in Research Studies
- Engaging Patient Partners throughout the Research Process
- Assessing Resources Required to Deliver TC Interventions
- Using Research Findings to Make an Impact on Policy
- Optimizing Patient-Centered Outcomes Research: Insights from a Patient Partner
- Communicating Complex Research Findings
- The Value of Peer Mentors
- Engaging Multiple Stakeholders to Optimize Success
- Value of Home Visits
- Turning Service Delivery Challenges into Opportunities to Improve Care
For Doris Rosenbaum, partnering with researchers in a meaningful way gives her a sense of optimism that improving care transitions for patients is within reach. “This work will actually change the way care is delivered and will make a difference,” she says. Rosenbaum, a member of the stakeholder advisory group (SAG) for Project ACHIEVE at the University of Kentucky, has served as an advocate, volunteer, and member of local and national boards for numerous organizations for many years.
Project ACHIEVE, a research study led by Mark V. Williams, MD, examines which types of transitional care interventions are most effective in improving outcomes important to patients and caregivers. The project integrates the perspectives of researchers with those of patients and caregivers—who provide input to optimize the study based on personal experience. Engagement of the project’s SAG throughout the research study is critical to its success, notes Rosenbaum.
Rosenbaum says it is especially important to obtain input from patient partners during a study’s initial phase of design and development. The members of the SAG, who are caregivers and former patients, emphasize the importance of communicating effectively with patients by “speaking their language.” “We remind researchers that many patients are not high school graduates and may have low health literacy. The researchers rely on our experiences and comments to communicate and build trust with patients,” she notes. “Some research ideas or approaches are not workable for patients in the real world. Sometimes, little things can make a big difference,” she says.
A particularly important issue from Rosenbaum’s perspective is the need for researchers to be conscientious regarding patients’ and caregivers’ time. For example, the SAG reviewed a survey instrument designed to solicit caregivers’ perspectives about their loved ones’ transition home from the hospital, and expressed concerns that the questionnaire would be too time-consuming and burdensome for caregivers to complete. The research team was able to reduce the length of the survey instrument to address this concern while still collecting essential data.
Rosenbaum also notes that it is helpful for research teams to set expectations with patient partners regarding their time commitment for project activities.
Advice for Others
- Invest the necessary time and resources to obtain feedback and buy-in from patient and caregiver stakeholders during all phases of your research study to ensure patient-centeredness.
- Promote authentic, meaningful partnerships with patients and caregivers and value the diverse perspectives they bring to the table based on personal experience.
- Be conscientious and considerate of people’s time in the design of research activities and when engaging patient partners.
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