The director of the Institute for Health, Health Care Policy, and Aging Research at Rutgers University discussed how patient feedback can positively impact the direction of dementia research.
"In research, having a community or advisory board can help shape the research studies, and the questions being asked so that we can ask more relevant questions that researchers may or may not have thought about before from a pure methodological perspective. That humanism, those more specific in-depth narratives, can help us do research better.”
Despite the depth that goes into constructing a clinical trial, the reality is that sometimes the destination for clinicians isn’t in line with those who have the condition in question. During real-world studies, the rigidness of inclusion criterion can be exposed, and the overall efficacy of a drug or treatment can come into question.
Clinicians such as XinQi Dong, MD, MPH, feel as though understanding more about what matters from a patient perspective could lend itself to better overall outcomes and more accurate results within clinical trials. For patients with dementia, there are a number of symptoms that need addressing, aside from the more commonly known cognitive changes and memory loss issues.
Dong, director of the Institute for Health, Health Care Policy and Aging Research, Rutgers University, recently was on a committee that assessed the evidence for care interventions for persons living with dementia and caregivers, as well as informed decision making about which interventions should be broadly disseminated and implemented. In an interview with NeurologyLive, he detailed the idea of strengthening patients’ voice in the clinical trial setting and how much input they should have as to which end points should be observed.