The NIH has made an extensive investment in the development and validation of improved person-centered outcome (PCO) measures through the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me), the Quality of Life in Neurological Disorders (Neuro-QoL), the NIH Toolbox for Assessment of Neurological and Behavioral Function (NIH Toolbox), and the Patient-Reported Outcomes Measurement Information System(R) (PROMIS(R)). These measurement systems are poised to dramatically improve assessment of PCOs in clinical research and practice as well as facilitate comparisons across studies. However, researchers and clinicians who wish to utilize these instruments today are challenged in identifying the instrument that best fits their needs, how to identify and address gaps in the research knowledge, and how to harness advances in measurement science for clinical or research purposes. The Outreach Core of the National Person-Centered Assessment Resource (PCAR) will engage in education, training, and dissemination activities in order to empower an increasing number of users to include PCAR instruments in their clinical and research work. We propose two aims for the Outreach Core: 1) To educate users and disseminate information about the appropriate use of PCAR, including selection, scoring, interpretation, and expansion of instruments from ASCQ-Me, Neuro-QoL, NIH Toolbox, and PROMIS;and 2) To expand the community of PCAR users by creating mechanisms to facilitate communication, collaboration, and pooling of data across users.
Aim 1 activities include training focused on PCO measurement science, psychometrics, and utilization of PCAR administration software, constructing instrument selection guides, one-on-one consulting with a wide network of PCO experts, and disseminating PCAR products such as white papers and freeware.
Aim 2 activities include submitting information about PCAR instruments to existing PCO instrument databases, creating and maintaining websites for the National PCAR and individual measurement systems, organizing an annual user conference, and creating and managing a database of users, including a PCAR wiki. We will utilize multiple approaches including screencasts, webinars, in-person meetings, publications, and web-based text and resources to support users'varied learning styles. Outreach Core personnel have unparalleled knowledge and experience in leading outreach activities for all four measurement systems, including identifying researchers' and clinicians'needs, developing multiple modes of training that target researchers at different knowledge levels, and providing consultation on scientific and technical questions. By utilizing innovations in web-based training and information dissemination to develop products that are self-perpetuating, we will minimize the burden of providing hands-on user support.