title: Using patient-reported outcomes and PROMIS in research and clinical applications: experiences from the PCORI pilot projects.
abstract: The field of patient-centered outcomes research (PCOR) continues to develop. Patient-reported outcomes and, in particular the Patient-Reported Outcomes Measurement Information System (PROMIS) contribute complementary data to clinician-derived outcomes traditionally used in health decision-making. However, there has been little work to understand how PROMIS measures may inform or be integrated into PCOR or clinical applications.
  
  
  
  Lead investigators from four pilot projects funded by the Patient-Centered Outcomes Research Institute (PCORI) collaborated to discuss lessons learned about the use of PROMIS in PCOR studies via virtual and in-person meetings. In addition, a qualitative data collection tool was used to assess the pilot projects' experiences.
  
  
  
  Lessons learned from the pilot projects centered on practical elements of research design, such as choosing the right outcomes to study, considering the advantages and limitations of the PROMIS short forms and computer adaptive technology versions, planning ahead for a feasible data collection process, maintaining the focus on patients by ensuring that the research is truly patient-centered, and helping patients and providers make the most of PROMIS in care.
  
  
  
  The PCORI pilot projects demonstrated that PROMIS can be successfully used to conduct research that will help patients make decisions about their care. Interest in PCOR continues to grow and the lessons learned from these projects about the use of PROMIS will be helpful to investigators. Given the numerous benefits of PROMIS, implementing this tool in research and care will hopefully lead to significant progress in measuring health outcomes that are meaningful and relevant to all stakeholders.
authors.affiliation: Division of Rheumatology, Johns Hopkins University, 5200 Eastern Avenue, MFL Center Tower Room 404, Baltimore, MD, 21224, USA. cbingha2@jhmi.edu.
authors.forename: Clifton O
authors.identifier: 0000-0002-4752-5029
authors.initials: CO
authors.lastname: Bingham
authors.affiliation: Divisions of Clinical Epidemiology, Rheumatology and Respiratory Epidemiology and Clinical Trials Unit, McGill University/Royal Victoria Hospital, 687 Av des Pins Ouest, Ross Pavillion R4.31, Montreal, QC, H3A 1A1, Canada.
authors.forename: Susan J
authors.initials: SJ
authors.lastname: Bartlett
authors.affiliation: Division of Rheumatology and Department of Biostatistics and Clinical Epidemiology, University of Pennsylvania, 3400 Spruce Street, Philadelphia, PA, 19104, USA.
authors.forename: Peter A
authors.initials: PA
authors.lastname: Merkel
authors.affiliation: Department of Epidemiology, Columbia University Mailman School of Public Health, 722 West 168th St., New York, NY, 10032, USA.
authors.forename: Thelma J
authors.initials: TJ
authors.lastname: Mielenz
authors.affiliation: Department of Psychiatry, University of Pittsburgh, 3811 O'Hara St., Pittsburgh, PA, 15213, USA.
authors.forename: Paul A
authors.initials: PA
authors.lastname: Pilkonis
authors.affiliation: Swedish Medical Center, 5300 Tallman Ave NW, Seattle, WA, 98107, USA.
authors.forename: Lauren
authors.initials: L
authors.lastname: Edmundson
authors.affiliation: University of Michigan School of Public Health, 1415 Washington Heights, Ann Arbor, MI, 48109-2029, USA.
authors.forename: Emily
authors.initials: E
authors.lastname: Moore
authors.affiliation: AcademyHealth, 1150 17th Street NW, Suite 600, Washington, DC, 20036, USA.
authors.forename: Rajeev K
authors.initials: RK
authors.lastname: Sabharwal
mesh_terms: D035843:Biomedical Research; D006801:Humans; D063868:Patient Outcome Assessment; D000071066:Patient Reported Outcome Measures; D010865:Pilot Projects; D011788:Quality of Life
keywords: Assessment center; Chronic disease; PROMIS; Patient-centered outcomes; Rheumatoid arthritis; Substance use; Vasculitis