The National Person-Centered Assessment Resource (PCAR) Principal Investigator: David Cella, PhD with its five subcontract sites, Northwestern University (NU) proposes to refine and sustain a Research Resource infrastructure that will educate and enable researchers and other interested health professionals on the use and interpretation of person-centered health outcomes. Person-centered health outcomes are those that are reported or performed by an individual research participant or patient, and that have importance to the quality of life of that participant. We refer to this resource as The National Person-Centered Assessment Resource, or PCAR. Specifically, PCAR will support the use and enhancement of four measurement information systems, currently funded as separate NIH programs: The Patient Reported Outcomes Measurement Information System(R) (PROMIS(R));The NIH Toolbox for Assessment of Neurological and Behavioral Function (NIH Toolbox);The Neurology Quality of Life Measurement System (Neuro-QoL);and The Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). Across our six performance sites (Northwestern University, University of California at Los Angeles, University of California at San Diego;University of North Carolina, University of Pittsburgh, and American Institutes of Research), we possess all of the necessary capabilities to perform the tasks designated in RFA CA-13-008. These capabilities include psychometrics, survey research, biostatistics, population statistics, software design and maintenance, electronic data capture and secure storage, technical support, health information technology integration, educational methods, website design, dissemination and implementation methods, marketing and communication, and business development. PCAR will provide an integrated platform for automated use of these four measurement information systems. The PCAR platform is already compatible with various modes of information collection (including web/mobile-based entry, non-digital paper source data, and others). During the funded period, we will move to sustain this platform and the educational and statistical services around them, under a fee-for-service model that will support free and open distribution of static, downloadable measures as well as administration, scoring, and interpretation tools. PCAR will also be designed to allow resource users (i.e., external researchers and clinicians unaffiliated with the resource) to access and use any of the four systems together or in isolation and tailor use to meet the specific study needs, while capturing and transmitting participant data securely. This expansive National PCAR vision will be realized by surrounding a sustainable Research Resource, located at NU and already operational (with annual ex-NIH PCAR revenues approaching $1,000,000), with core supporting expertise in statistics, outreach, and administration, including project management and business development.
The National Institutes of Health (NIH) has played a major role in advancing our ability to measure and report health and health care outcomes that are important to the everyday lives of people of all ages. We refer to these outcomes as person-centered outcomes. Four NIH-sponsored initiatives in this area have recently concluded, and are now ready for widespread use. This project will bring all four of these person- centered outcome measures together and then educate, equip and enable researchers and clinical providers to use them correctly and effectively. We refer to this as the National Person-Centered Assessment Resource, or PCAR. PCAR will be based at Northwestern University, and staffed by personnel at NU with five other collaborating sites around the country. PCAR will enable users to access and deploy any or all of the four systems through a Research Resource that includes a single web-based Assessment CenterSM. This national resource will be supported by three specialized groups: A Statistical Core to ensure that the measures meet the highest measurement standards;An Outreach Core to support users through education and dissemination of measure selection, administration, and interpretation guidelines;and an Administrative Core to create and implement a plan to sustain PCAR after NIH funding ends. Research Resource Functionality Description as provided by applicant): We propose to provide, improve and support a National Person Centered Assessment Resource (PCAR) for use by the research and clinical community. Within the Research Resource, we propose three specific aims: 1) Provide a state-of-the-art, centralized resource to enable the preparation, downloading and administration of the complete portfolio of PCAR instruments;2) Improve the resource by enhancing usability, increasing system robustness, and facilitating mechanisms for a changing funding structure;and 3) Support existing and new resource users. To accomplish these aims, we will leverage our existing system, Assessment Center, providing a central resource for all the PCAR instrument systems, project set-up and administration software, and related educational materials needed for appropriate use. We will enhance and sustain the existing integration of PROMIS, NIH Toolbox, and Neuro-QoL in Assessment Center, and incorporate ASCQ-Me so that users of PCAR may include these measures into their research and practice. Our approach will enable an economical and efficient integration of these four NIH-funded measurement systems. Our solution will require little or no user customization during subsequent data collection. It will also allow for the integration of legacy and custom measures. All measures may be seamlessly administered to study participants via a variety of platforms and modalities. Improvements to the measurement system will be made to ensure ongoing sustainability by improving usability, enhancing system robustness and supporting a changing funding structure. To maximize benefit and function, the resource will seek the input of the PCAR Core stakeholders as well as system users throughout the improvement process. Members of the resource will provide in-depth support to users through communication, documentation and software channels. The Research Resource will facilitate the training of PCAR users alongside the Outreach Core and disseminate new statistical and psychometric findings produced by the Statistical Core. Staff will work closely with and draw from the PCAR Cores to make available scientific and technical expertise to the person-centered outcomes user community. This collaboration with Cores includes initiatives to ensure efforts are productive and solutions meet user needs and expectations. The Research Resource will look to the PCAR Steering Committee for prioritization of direction on technology improvement work and to the Administrative Core to assist in the execution of the business plan to ensure that it adheres to shifting scientific and technical needs. The experience and expertise of Research Resource team is unmatched. Our team includes PCO scientists, software developers, usability experts, web designers, project managers and communications specialists who have worked collaboratively and cohesively to provide, improve and support PCAR tools for nearly a decade. Through the aims of this grant, the Research Resource will enable a comprehensive, accessible and sustainable National PCAR extending beyond the funded period.