Our mission is to standardize patient-reported outcome (PRO) measures so that results from studies of treatment outcomes, individual patient data, and population norms can be compared and to make information about outcomes more useful in improving the quality of health care.
To do this, we improved, standardized, normed and integrated disease-specific and generic PRO measures. We also developed a more powerful data collection system that automatically adapts to the presence of multiple chronic conditions and to the requirements of each purpose of measurement.
Our Approach Includes:
- Identifying a core subset of health domains
- Integrating disease-specific and generic measures
- Standardizing data collection methods across platforms
- Improving the efficiency of screening and estimating outcomes
- Cross-calibrating metrics so that results can be compared
- Providing guidelines to interpret PRO data
Health Insurance Experiment (HIE)Largest experiment in health care; studied cost, quality and patient-reported outcomes across fee-for-service and prepaid plans.
Medical Outcomes Study (MOS)Comprehensive 4-year observational study of patient-reported outcomes for chronically-ill adults treated in different systems of care.
MOS 36-Item Short-Form Health SurveyMore practical 36- and 12-item short-forms made available by the Medical Outcomes Trust for scholarly research.
Item Response Theory (IRT)IRT-based computer adaptive health assessments based on item banks calibrated from MOS study data.
R&D at QualityMetricIndustry- and NIH-sponsored R&D of web-based electronic data capture for both generic and disease-specific PROs.
John Ware Research Group (JWRG)JWRG founded to improve patient-reported outcome (PRO) tools for use in research and clinical practice worldwide.
QOLIX with QGEN & QDIS powered by ASLXA web-based PRO monitoring system that integrates disease-specific (QDIS) and generic (QGEN) measures using more powerful survey logic (ASLX) to automatically adapt to the requirements of diverse applications.
John Ware Research Group inherits a rich legacy from the research efforts launched by Dr. Ware in the early 1970's while completing his graduate school training in measurement and statistics at Southern Illinois University. His early focus was on the development of self-assessed health and patient satisfaction measures. After receiving his doctorate, he joined Rand Corporation, where he was the lead psychometrician on the Health Insurance Experiment (HIE), the largest social experiment in health care, and continued to advance health status and patient satisfaction measurement for adults and children. While at RAND, the measurement tools he developed for use in health policy studies began to be successfully used in clinical trials and he shifted his focus to adapting them for widespread use and to standardizing data collection and scoring methods so that results could be compared and meaningfully interpreted across all applications. In addition, he began work as the Principal Investigator of the Medical Outcomes Study (MOS), the most comprehensive and longest observational study of health outcomes for chronically ill adults treated in different systems of care.
Tufts Medical Center (TMC) recruited Dr. Ware in 1988 to introduce his pioneering work in health outcomes measurement into the information systems being developed to improve health care and to help build its new Health Institute. Early in his tenure at Tufts, while completing the MOS, he developed and published a more practical 36-item short-form health survey (SF-36®), which is now the most widely-used patient-reported health survey worldwide. He co-founded the not-for-profit Medical Outcomes Trust to assure availability of the SF-36 and other MOS tools for scholarly research. Additionally, with industry support he initiated the International Quality of Life Assessment (IQOLA) Project to translate the SF-36 for use in multi-national clinical trials. Other contributions at TMC included co-development of the Child Health Questionnaire (CHQ), participation in the Medicare Health Outcomes Survey (MHOS) and developing the Understanding Health Outcomes multimedia educational programs - the first comprehensive and accredited educational series for teaching the language, concepts, science, and practical applications of PRO surveys. He also began applying item response theory (IRT) to health status measures at TMC and led the effort to program the first IRT-based computer adaptive health assessment based on a mental health item bank calibrated from MOS study data.
In 1997, Dr. Ware co-founded QualityMetric Incorporated (QMI) and was QMI's first CEO and Chairman for more than 10 years (1997-2008). QMI’s goal was to develop a sustainable business model for generic PRO tools used in clinical research and for new information systems used to monitor population health and improve health care outcomes. During his tenure at QMI, Dr. Ware initiated a research and product development division sponsored largely by NIH grants including Small Business Innovation Research (SBIR) awards that compared short-form generic health measures (SF-36®, SF-12®, SF-8™) with legacy and new disease-specific surveys measuring the impact of chronic kidney disease, headache, asthma, and numerous other chronic conditions. He also joined forces with Jim Fries, MD as Co-PI on the Stanford-based Patient Reported Outcomes Management Information System (PROMIS®) Primary Research Site that applied IRT methods to develop the PROMIS physical functioning item bank.
In 2009, Dr. Ware was appointed Professor and Chief of the Outcomes Measurement Division within the Department of Quantitative Sciences (QHS) at the University of Massachusetts Medical School (UMMS) and founded John Ware Research Group. At UMMS, he provided oversight to psychometric cores within large NIH-sponsored patient registries focusing on PROs following total joint replacement (national FORCE-TJR registry) and treatment for acute coronary syndrome (TRACE-CORE). At JWRG, he focused on conducting research and development with NIH SBIR grant support and with JWRG’s own research funds. Products of this R&D included the Quality of Life Disease Impact Scale (QDIS®), the first disease-specific QOL impact measure to standardize content and norm-based scoring across diseases, and ASLX®, a more powerful survey logic that automatically adapts to the presence of multiple chronic conditions in administering disease-specific measures. ASLX has been successfully applied using QDIS item banks for nine chronic conditions and field tested in a national outcomes registry. An independent test supporting the psychometric methods underling QDIS standardized norm-based scoring was recently published in Quality of Life Research.
JWRG At A Glance
John E. Ware, Jr., PhD
Founder, Chief Science Officer
Barbara Gandek, PhD
Senior Research Scientist
Vice President, Technology