A new free, publicly available information network for clinical researchers is helping scientists collect and share their patient-outcomes data with others. The Patient-Reported Outcomes Measurement Information System (PROMIS), a National Institutes of Health initiative, is providing the tools researchers need to shepherd the thousands of independent patient-reported measures into an efficient, standardized system. The result will be a bank of items researchers can use to create and administer increasingly targeted and efficient measures.
PROMIS was born in 2004 as part of NIH's Roadmap, an initiative designed to foster collaboration across disciplines to tackle looming biomedical research questions. For psychology, those include pain, fatigue, anxiety, depression, anger, social role participation and sleep habits. That list continues to grow as NIH staff and collaborators collect more and more patient-reported measures from the clinical research community.
Drawing from psychometric research and theory, the project seeks to create a system where all measures consist of standardized items: everything similarly validated and everything catalogued by its relationship to other items.
"Our hope was that we could develop more generic measures that could be used across multiple sorts of diseases," says William Riley, PhD, a science officer for PROMIS and deputy director for NIMH's Division of AIDS and Health and Behavior Research. "For instance, we could combine measures of depression not only in psychiatric samples, but also in cardiovascular samples and cancer samples."
PROMIS's strength lies in its generalizablility, Riley says. For years, researchers developing PROMIS reviewed every self-report measure they could find. They broke those down into the individual items and questions and categorized them into generic items that were no longer part of any one specific measure. For example, a researcher who wants to create a new test for depression could pick and choose specific items such as "In the past seven days, I felt worthless" or "In the past seven days I felt that I had nothing to look forward to" and leave out questions that don't fit the patient.
Last year, PROMIS rolled out its first item bank for clinical research use. Researchers can use the system by logging onto the assessment center at the PROMIS Web site and searching for items that target whichever research question they're interested in. They can then build a measure on the site and direct their patients to a Web site to post their responses. Alternately, researchers can administer pen-and-paper measures and fill in the results online themselves.
Researchers at PROMIS are also working on a feature that will allow the system to adapt measurements in real-time, based on how patients respond to particular items. If patients are taking an anger survey, for example, the test will automatically zero in on particular types of anger, duration, and other factors that will help researchers better understand the patient's condition. That would lead to even more targeted measures, Riley says.
"You're able to really get a precise estimate in a very short number of items because you're maximizing the use of each item," he says.
Eventually, those working on PROMIS hope it will be an effective tool for clinicians and practitioners, as well, says George Washington University psychologist and health policy analyst Ann Doucette, PhD. The system's computer-adaptive response would allow psychologists to more quickly develop a comprehensive understanding of their patients' health status.
"Having a fuller, more comprehensive picture of the patient would allow clinicians to offer more optimal and effective treatments," Doucette says.
Because the system is currently geared only toward a few specific domains, such as depression and sleep disorders, PROMIS will have to grow in scope before it's useful to practitioners, she says. As more and more researchers plug their data into the system, though, that growth will become a reality.
The PROMIS team also hopes the system could be integrated into the Obama administration's call for increased availability of electronic medical records. Doing so, in collaboration with other health fields, would give primary-care physicians and mental health providers alike a more robust picture of their patients' health by giving researchers a better look at the intersections between mental and physical health, Riley says.