At PCORI, we engage patients, caregivers, clinicians, and other healthcare stakeholders throughout the research process. We believe this approach will help us to get the research questions right and make it more likely that the results of the studies we fund will change practice. Involving clinicians in our research is important because they see research needs every day as they practice medicine. They can also help researchers determine whether or not a study protocol or intervention would work in the real world.
We’re lucky. Our research portfolio includes many clinicians—physicians, physician assistants, nurses, and rehabilitative professionals—who are actively involved in our studies, and they are helping to make our research more successful.
Controlling Childhood Asthma
A study in Chicago is looking at interventions aimed at reducing the burden of childhood asthma, which disproportionately affects African-American children. Interviews with physicians and nurses conducted before the study began led to modifications in design.
Many children with uncontrolled asthma need to make frequent visits to the emergency department, and clinicians there often counsel patients and caregivers on ways to control asthma. However, according to the emergency department clinicians whom the researchers interviewed, patient education on self-care often occurs when children and their caregivers are about to leave. As a result, they aren’t able to take full advantage of the information they are given.
With this in mind, the researchers modified the study so that education occurs at various “teachable moments” throughout the patients’ time in the emergency department, not just at the end of the visit. This change in design allows researchers to evaluate patients’ and caregivers’ understanding—and identify the need for additional rounds of education. The researchers plan to continue to engage clinicians in the study’s conduct, monitoring, and dissemination activities.
Looking at Lipids
A study at Tufts Medical Center and Boston Children’s Hospital in Boston is exploring what adolescents and their parents prefer in terms of lipid screening and the treatment of high cholesterol. It will also compare the effectiveness of different screening and treatment strategies. Right now, there is no consensus on whether all adolescents should be tested for high cholesterol levels.
In planning the study, the research team engaged adolescents, parents, adult and pediatric primary care and specialty clinicians, health plan and health system medical directors, policy makers concerned with cholesterol screening and statin use, and health communications experts. These stakeholders provided feedback on issues related to both policy and clinical practice, including patterns of lipid screening and statin use among adolescents. The involvement of all of these different types of stakeholders was essential to shape the project’s direction, refine the study’s decision-making models, and prioritize the dissemination of findings.
Comparing Rehabilitation Services after Stroke
In a study at Duke University, researchers are looking at what type of rehabilitation provides the best outcome for stroke survivors. Rehabilitation can lower survivors’ level of disability, which helps patients get back to managing their day-to-day care themselves. There are many rehabilitation options—including those in the rehabilitation unit at a hospital, in a skilled nursing facility, at an outpatient rehabilitation clinic, or at home. Nevertheless, 40 percent of survivors receive no rehabilitation after they leave the hospital.
The researchers are looking at three aspects of rehabilitation for patients who have been hospitalized with acute ischemic stroke:
- Effectiveness of low-intensity versus high-intensity inpatient rehabilitation
- Effectiveness of outpatient versus home-based rehabilitation after patients leave the hospital
- Factors that predict use of rehabilitation after leaving the hospital
Clinicians have worked with researchers to analyze several large national datasets that include clinical registry data, claims data, and patient-reported outcomes. The clinicians posed important questions that helped refine the project’s direction. As a result, the study is now looking more closely at variations in patterns of care delivery and the outcomes that result. Evidence of trade-offs between different types of rehabilitation will help guide individual decisions and improve future practice, policy, and patient-centered outcomes for stroke survivors.
Clinicians, who are on the ground delivering care, have valuable insights about the issues that patients face. They also know what will and won’t work within clinical settings. Involving clinicians in our research process is critical to PCORI’s success.