The PROMIS® Health Organization (PHO) is a 501(c)(3) charitable foundation which was founded in 2008 by a group of scientists who were funded by the National Institutes of Health to develop and validate the PROMIS item banks.
It is now an open society that welcome members from around the world to bring the "patient's voice" to the forefront of care.
The Four Main Goals of the PHO:
1. Advance the Science of Health Outcomes Assessment
The PHO will foster and support a community of researchers, collect PRO data for research and improvements to PROMIS®, support the addition of new domains and items to the system, test the system for new populations, and maintain scientific integrity by demonstrating reliability, validity and responsiveness.
2. Disseminate Standardized and Validated Health Outcome Questionnaires
The PHO will encourage widespread PROMIS adoption by maintaining open access to all interested parties for item banks, software, and findings from research. We will provide reliable, valid, and cost-effective measurement of relevant health outcomes to the greater scientific and clinical research community and to other health care organizations.
3. Foster Development of New Patient-Reported Health Outcomes for Diverse Populations
We will establish a broad inventory of methods for capturing PRO data from diverse population groups. These methods will include administering both static short forms and dynamic CAT through various secured delivery platforms; these will allow for different modes of administration while reducing mode effects to maintain reliability. This goal includes developing translations.
4. Educate the Scientific and Clinical Communities on The Science Of Patient Reported Outcomes
We will communicate the value of PROMIS to the scientific and research community, emphasizing the performance of PROMIS instruments in terms of reliability, validity, and responsiveness compared with legacy instruments. We will increase clinical adoption by organizing and presenting PRO data that are relevant and useful to clinicians, patients, and researchers. Finally, we will contribute to re-engineering the clinical research enterprise by creating useful endpoints for clinical trials and research studies.
PROMIS and the PROMIS logo are registered trademarks of the U.S. Department of Health and Human Services (HHS).
Our Long-Term Aspirations Include:
- Developing PROMIS into a gold-standard outcome metric,
- Achieving widespread adoption domestically and internationally,
- Becoming part of routine clinical practice across multiple specialties,
- Maintaining consistent growth to support continual improvements,
- Remaining open, accessible, and low-cost to users, and
- Fostering a vibrant PROMIS community.