This year marks the 10th anniversary of the National Institutes of Health (NIH) Common Fund. Launched in 2004 as the NIH Roadmap for Medical Research, and later renamed the Common Fund, this effort supports programs designed to change the way science is conducted – through the establishment of new scientific fields or paradigms, the development of novel approaches to how scientists conduct their work, or the generation of resources that catalyze research and enable discovery. In honor of this important milestone, my letter this month focuses on the NIH Common Fund and the Patient-Reported Outcomes Measurement Information System (PROMIS), an important program in which the NIAMS has played a leading role.
Led by the NIAMS and the National Center for Complementary and Alternative Medicine, the PROMIS initiative that was meant to help re-engineer clinical research, was launched in 2004 as part of the effort to address the high-priority need for improved assessment of symptoms and patient outcomes in clinical studies. The initiative aims to bring patients’ voices and experiences into clinical research and care, with the goal of developing interventions that will improve the day-to-day lives of people. Although a number of patient-reported outcome tools were available when PROMIS first began, it was difficult to compare results across studies because researchers often used different instruments, many of which were lengthy, complex and burdensome for respondents. PROMIS set out to create a validated, dynamic system to efficiently measure patient-reported outcomes in people with a wide range of chronic diseases and demographic characteristics.
Over the past ten years, PROMIS investigators have developed reliable, precise measures of patient–reported physical, mental, and social well–being that are applicable to individuals with a range of chronic conditions. These include such domains as pain, fatigue, physical functioning, emotional distress, quality of life, and social role functioning. Because PROMIS is not a disease-specific tool, it can be used to make comparisons across different diseases and conditions. It uses a method called computer adaptive testing, or CAT, which can reduce the burden on respondents by tailoring the assessment to each individual by posing questions based on the response to the prior question. PROMIS is very inclusive. Measures have been developed for children and adults, and the tool can be tailored to individuals across a broad spectrum of reading levels, languages, physical function, and life-stages. Today, PROMIS is being used by many clinical researchers and has begun to be applied in clinical care. To encourage more individuals to use the tool, the PROMIS website offers information for researchers and clinicians.
As I reflect on a decade of discoveries made possible by the Common Fund, I am delighted by the progress that we have made towards accomplishing the initiative’s goals. PROMIS is an outstanding example of the Common Fund’s success, but it is certainly not the only one. Common Fund programs have advanced research and development in a number of areas, from the microbiome and epigenetics to computational biology and new tools and approaches for clinical research. Looking forward, I anticipate many exciting discoveries to come!