Policy advocates and researchers are often conceptualized as separate roles that rarely, if ever, cross. However, in reality many researchers may not have started out as policy advocates, but based on their research findings, or use of research findings in practice, have impacted the world of healthcare policy.
One such person is Deborah Bruner, PhD, RN, FAAN, professor and the associate director of outcomes research at the Nell Hodgson Woodruff School of Nursing at Emory University in Atlanta, GA. Bruner says she started on her path to being a strong healthcare policy advocate by serving on committees at the National Cancer Institute, which often set policy.
“The committee work included assembling the most current data from research studies and setting policy based on the data,” Bruner says. “The policies we set didn’t always change laws, but they have affected oncology research priorities, funding, strategic planning, and bedside nursing.”
One particular area of focus for Bruner has been patient-reported outcomes (PROs). PROs have long been established as the most valid and reliable method of assessing subjective toxicities, symptoms, quality of life, and patient preferences. Many PRO instruments that are psychometrically validated are predictive of survival and adherence to therapies. Adherence to effective therapies is of significant concern and interest to clinicians, researchers, insurers, and policy makers. Although many pharmaceutical and technologic therapeutics are employed in the treatment of cancer, almost all come at the risk of significant side effects.
“PRO data helps us understand the patient experience, impact on quality of life, and reasons for nonadherence,” Brunner explains. “PROs help point-of-care nurses to better understand patient experiences, evaluate indicators of survival and adherence, and impact quality of life.”
Oncology nurses collect data on PROs for patients on clinical trials, when assessing symptoms such as pain or nausea and vomiting, and with patient satisfaction evaluations. Comparative effectiveness research is an increasingly common area where PROs are used to assess treatment modalities.