Origins of PROMIS

Literature Review Items | Archival Data Analysis | Item Classification

In May 2002, the Director of the National Institutes of Health (NIH) convened a series of meetings to chart a "roadmap" for medical research in the 21st century. From those meetings the NIH Common Fund was created to address significant public health problems facing biomedical research that no single Institute could tackle alone but that by combining resources, the NIH institutes together could accelerate the progress of medical research. The ultimate goal of the NIH Common Fund is to catalyze changes necessary for transforming new scientific knowledge into tangible benefits for people in three areas: New Pathways to Discovery, Research Teams of the Future, and Re–engineering the Clinical Research Enterprise.

One of the programs within the Re–engineering the Clinical Research Enterprise initiative involved the Dynamic Assessment of Patient–Reported Chronic Disease Outcomes. In support of this initiative, in September 2004, the NIH initiated a multicenter cooperative group, referred to as the Patient Reported Outcomes Measurement Information System (PROMIS).

Six primary research sites and a statistical coordinating center were funded in the 2004–2009 round of PROMIS grants.

The foundational work of this dedicated set of researchers provides the scientific basis included in this section and upon which PROMIS continues to build.

Accomplishments of the PROMIS Network during the first round of included:

  • Established domain framework and selection of candidate items for an initial set of adult and pediatric item banks.
  • Established and administered the PROMIS core questionnaire in paper and electronic forms to a large sample of individuals suffering from a variety of chronic diseases. Analyzed and used collected data to calibrate the item sets to build the PROMIS item banks.
  • Built an electronic Web–based resource for administering computerized adaptive tests, collecting self–report data, and reporting instant health assessments.
  • Conducted feasibility studies to evaluate the utility of PROMIS and promote widespread use of the instrument for clinical research and clinical care.
  • Supported both independent and network–wide research projects that will benefit PROMIS.
  • Developed a plan to establish a public&ndashprivate partnership to sustain the repository, ensure scientific excellence, improve future data collection activities, add new domains and items to the system, test and adapt the system for new populations, maintain the system in the public domain, and extend the application of the system for clinical research and practice.