Cindy Nowinski, PhD, MD
In my research, I have primarily focused on measuring patient-reported (PRO) and other health outcomes in order to facilitate research, increase scientific knowledge and ultimately improve health and the quality of health care. I have extensive experience in developing person-centered measures and am very familiar with the measurement systems (Neuro-QoL, Patient Reported Outcomes Measurement Information System/PROMIS and the NIH Toolbox) we will use to follow important outcomes. I was co-investigator on Neuro-QoL (a Health-Related Quality of Life Measurement System for People with Neurological Disorders), and on the PROMIS Pain Supplement, which expanded PROMIS pain assessment for children and adults. I was Scientific Director of the NIH Toolbox project, which developed instruments to assess cognitive, motor, emotional and sensory health and function for people aged 3-85. As a member of the Person Centered Assessment Resource (now known as HealthMeasures) I currently provide scientific support and consultation to users of all 3 measurement systems. Central to all of these PRO initiatives was a reliance on extensive stakeholder (e.g., patients, caregivers, clinicians) input via focus groups, interviews and surveys so that instruments we developed are targeted to those aspects of health and function important to them. I am excited to be involved in the proposed project which will include evaluation of associations between specific services and person-centered outcomes so that the most effective programs and services can be matched to gaining individuals needs and priorities. For the proposed project, I will utilize my experience and expertise in outcomes measurement to help implement PRO assessments, evaluate and interpret results, and participate in manuscript writing and other dissemination activities.