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 multiplechronic 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
John Ware Research Group (JWRG) is a privately held company founded in 2009 by John E. Ware, Jr., PhD to continue innovative research to improve patient-reported outcome (PRO) tools for use in population health surveys, clinical research and clinical practice worldwide. JWRG maintains its offices in Watertown, Massachusetts.
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.
Founder, Chief Science Officer
John E. Ware, Jr., PhD is Founder and Chief Science Officer at the John Ware Research Group and Professor and Chief of the Division of Outcomes Measurement Science in the Department of Quantitative Health Sciences at the University of Massachusetts Medical School (UMMS). Dr. Ware is an internationally recognized leader in the field of healthcare outcomes assessment and a member of the Institute of Medicine (IOM), National Academy of Sciences. Prior to joining the UMMS faculty, Dr. Ware founded QualityMetric Incorporated and served as its CEO and Chairman for more than 10 years. He served for 12 years as Senior Scientist, The Health Institute, Tufts Medical Center in Boston, and was the Principal Investigator of the Medical Outcomes Study (MOS), where he led the development of the SF-36® Health Survey and other tools widely used in documenting disease burden and treatment outcomes. He has published more than 400 peer-reviewed articles, including papers on patient satisfaction and health outcomes measures used in the Health Insurance Experiment and the MOS. In the early 1990's, Dr. Ware was among the first to apply "modern" psychometric methods to PRO measurement in search of ways to cross-calibrate different PRO instruments and enable more efficient computerized adaptive test (CAT) administrations. This work has had substantial impact on the field of quality of life (QOL) research, leading to a 2003 President's Award from the International Society of Quality of Life Research. More recently, Dr. Ware successfully implemented a novel approach to measuring and standardizing the impact of multiple chronic conditions and norming these measures in the chronically ill population. This advance enabled the development of the QOL Disease Impact Scale (QDIS®). Dr. Ware’s other awards and honors include Pepperdine University's 25th Annual Dolores Award to the outstanding graduate in psychology and education, Academy Health’s 1994 Distinguished Investigator Award for "Significant and Long-lasting Contributions to the Field of Health Services Research," the 1998 Novartis/Zitter Group Outcomes Leadership Award for advancing the science of outcomes research, and the 1999 Foundation for Accountability (FACCT) Ellwood Award, presented in recognition of his lifetime efforts to create "a consumer-focused, accountable healthcare system". Dr. Ware was also the first recipient of the ISPOR Avedis Donabedian Outcomes Research Lifetime Achievement Award in 2002. He was elected as a Fellow in the National Academy of Inventors in 2013.
Director of Research
Barbara Gandek, PhD has worked with Dr. Ware for more than 25 years, first at The Health Institute at Tufts Medical Center, then at the Health Assessment Lab and QualityMetric Incorporated, and now at the John Ware Research Group. Dr. Gandek was extensively involved in the development, translation and documentation of the SF-36® Health Survey, starting in 1990 with the provision of technical assistance to early SF-36 adopters. She co-authored the first SF-36 manual in 1993 along with six other SF user manuals over the next 15 years and worked extensively with researchers who were translating and validating the SF-36 through the International Quality of Life Assessment (IQOLA) Project. Dr. Gandek helped develop more than 300 translations of the SF-36 and other health surveys, co-authored papers with researchers from around the world, and co-edited (with Dr. Ware) the November 1998 issue of the Journal of Clinical Epidemiology which contained 32 peer-reviewed papers from the IQOLA Project. As item response theory (IRT) and computerized adaptive testing became more widely-used to measure patient-reported outcomes (PROs), Dr. Gandek also worked on a number of IRT projects and was a member of the team that developed and published the PROMIS® physical function item bank. Her recent research has focused on the psychometric properties of PRO instruments used in total knee replacement, using data from the national FORCE-TJR joint replacement registry based at the University of Massachusetts Medical School (UMMS). Prior to working with Dr. Ware, Dr. Gandek worked at the Health Data Institute, an innovator in the use of insurance claims data to study health care utilization patterns, and Mathematica Policy Research. Co-author of more than 50 peer-reviewed publications, Dr. Gandek is on the Editorial Board of Arthritis Care and Research and is an Instructor at UMMS and at Tufts University School of Medicine. She holds a PhD in Clinical & Population Research from UMMS, a MS in Health Policy and Management from the Harvard School of Public Health, and a BA in Economics from Swarthmore College.
Vice President, Technology
Responsible for the overall technology stance of the company, Mr. Ryan is a career technologist with a strong focus on product creation, efficiency through process automation, and bleeding-edge implementation. With over 15 years of engineering and technology management experience, he has led both the internal IT systems and external technological product lines at JWRG for 4 years and serves as the principal architect for the QOLIX® platform. Prior to JWRG, Mr. Ryan held positions in engineering management, architecture, and high-security operations. He began his career as a U.S. Marine.
John Ware Research Group (JWRG) is a privately held company founded in 2009 by John E. Ware, Jr., PhD to continue innovative research to improve patient-reported outcome (PRO) tools for use in population health surveys, clinical research and clinical practice worldwide.
Phone: +1 (508) 363-1236
Address:
10 Wheeler Court, Watertown, MA 02472
Email: info@jwrginc.com