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Upcoming Events

From Populations to Patients: Progress, Challenges and Solutions for Better Understanding Health Outcomes

October 20th, 2016 | 23rd Annual Conference of the International Society for Quality of Life Research (ISOQOL), Copenhagen, Denmark

Dr. Ware will present an address entitled “From Populations to Patients: Progress, Challenges and Solutions for Better Understanding Health Outcomes” in the opening plenary of the 23rd Annual ISOQOL Conference. He will provide his perspectives on advances made in the health-related quality of life (HRQOL) measurement field over the past few decades, the major challenges in the field today, and potential conceptual, methodological and technical solutions for these challenges. Dr. Ware also will participate in a session in which he and other senior researchers will give advice to new researchers on successful strategies for dealing with challenges in their research and career paths. In addition, he will take part in a roundtable discussion on the pros and cons of disease-specific and generic HRQOL measures.

JWRG’s Director of Research, Barbara Gandek, also will give a presentation entitled “Can the Accuracy of Generic Health Outcome Predictions Be Improved Using Individualized Di ...

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Previous Events

Measurement, Design, and Analysis Methods for Health Outcomes Research Course: Ware Lecture and Workshop

August 15th – 17th, 2016 | Harvard School of Public Health, Boston, MA

Dr. Ware presented his annual lecture entitled “New Techniques for Health Outcomes Measurement and Evaluation” at the Measurement, Design, and Analysis Methods for Health Outcomes Research course held from August 15-17 at the Harvard School of Public Health. The lecture covered noteworthy milestones in the history of patient-reported outcomes (PROs) as well as some of the most innovative and important recent conceptual and methodological advances.  The latter included standardized metrics for the domains measured by legacy generic PROs and a new generation of standardized disease-specific PROs that use disease-specific QOL impact attributions to fill the gap between disease-specific symptoms that are not QOL and generic QOL measures that are not disease-specific.  In the afternoon worksho ...

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40th Anniversary Celebration of the RAND Health Insurance Experiment

June 9th – 10th, 2016 | Rand Corporation, Santa Monica, California

Dr. Ware participated in the 2-day celebration of the 40th anniversary of the RAND Health Insurance Experiment (HIE), the largest health policy study in U.S. history. He reunited with his colleagues on the HIE research team and others at RAND’s Santa Monica headquarters for discussions about how this landmark study has changed the health policy landscape over the last few decades.

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Latest developments in patient-reported outcomes measures and their implications for clinical research and practice: Ware Seminar

February 12th, 2016 | Cleveland Clinic Neurological Institute, Center for Outcomes Research & Evaluation, Cleveland, Ohio

Dr. Ware presented a seminar on the latest patient-reported outcome (PRO) measurement developments and their implications for clinical research and practice and had open discussions with researchers and clinicians actively involved in patient-centered data initiatives at Cleveland Clinic on February 12, 2016.

The seminar briefly summarized the history of PRO measurement and some of its most innovative and important recent conceptual and methodological advances. These advances include the standardization of metrics across population surveys, patient registries, clinical trials and clinical practice applications; methods that are adapted to the specific requirements of different applications while maintaining score comparability across applications; a new generation of disease-specific PROs that use comprehensive disease-specific QOL impact attributions to fill the gap between disease-specific symptoms that are not QOL and generic QOL measures that are not disease-specific; more aggressive approaches to making PRO ...

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Cutting Edge Solutions to Improving the Efficiency of PRO Measurement

October 23nd, 2015 | 22nd Annual Meeting of the International Society for Quality of Life Research (ISOQOL), Vancouver, British Columbia, Canada

Dr. Ware presented “Cutting Edge Solutions to Improving the Efficiency of PRO Measurement: From Real-Data Simulations to Pilot Testing Before and After Total Joint Replacement in a National Registry,” a paper co-authored with Barbara Gandek from John Ware Research Group (JWRG) and the University of Massachusetts Medical School (UMMS), Worcester, MA and Patricia Franklin and Celeste Lemay from UMMS.  The pilot test was a real-world implementation of the QOLIX® monitoring system, which integrates and standardizes generic and disease-specific patient-reported outcomes (PRO) measures.

At the core of this new approach is the Quality of Life Disease Impact Scale (QDIS®) developed by JWRG to fill the gap between disease-specific symptoms that do not measure quality of life (QOL) and generic PRO measures that are not disease-specific. Previous studies comparing QDIS with legacy (SF-12® Health Survey, SF-3 ...

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Measurement, Design, and Analysis Methods for Health Outcomes Research Course: Ware Lecture and Workshop

August 17th – 19th, 2015 | Harvard School of Public Health, Boston, MA

Dr. Ware presented his annual lecture entitled “New Techniques for Health Outcomes Measurement and Evaluation” at the Measurement, Design, and Analysis Methods for Health Outcomes Research course held from August 17-19 at the Harvard School of Public Health. The lecture covered noteworthy milestones in the history of patient-reported outcomes (PRO) as well as some of the most innovative and important recent conceptual and methodological advances.  The latter included a new generation of standardized (both content and scoring) disease-specific PROs that fill the gap between widely-used disease-specific measures that are not QOL and generic QOL measures that are not disease-specific.  In the afternoon workshop, entitled “Integrating Generic and Disease-Specific Assessments:  What Are the Issues?&rdquo ...

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Standardizing and Integrating Disease-specific and Generic Patient-reported Outcome Measures

June 24th 2015:  Center on Behavior and Health (VCBH), University of Vermont, Burlington, Vermont

Dr. Ware lectured on conceptual and methodological milestones in patient-reported outcomes (PRO) measurement development.  He introduced a new generation of disease-specific PROs that fill the gap between widely-used disease-specific measures that are not health-related quality of life (QOL) and generic QOL measures that are not disease-specific.  Dr. Ware showed how both the content and scoring of disease-specific QOL impact measures has been standardized across diseases to enable norm-based scoring and interpretation of disease-specific PROs in the chronically-ill US population.  Results from a pilot demonstration test in an ongoing surgical registry illustrated how a powerful new adaptive survey logic can automatically adapt PROs to capture the impact of multiple chronic conditions to make comprehensive measurement more practical.

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Cutting Edge Research: Do health attributions make a difference in responses to questions about limitations in work and other role activities?

October 16, 2014 | Berlin, Germany

International investigators who have been comparing health survey items with and without health attribution for more than 10 years teamed together and presented their findings at a special plenary session on Cutting Edge Research at the 21st Annual Conference of the International Society for Quality of Life Research (ISOQOL) in Berlin, Germany on October 16, 2014. This ISOQOL session highlighted high quality research from members of the ISOQOL community. The research team (Jakob Bjorner, Janine Devine, Barbara Gandek, Matthias Rose, Mark Kosinski, and John Ware) presented results from studies of a representative sample of US adults (N=900) who completed sets of questions about role functioning which differed in attribution (no attribution or attribution to health, physical health, or emotional health) but were otherwise identical in content. For example, some standard measures, such as the SF-36 Role Physical and Role Emotional subscales, use items with health attribution (e.g., “… have you had any of the following problems with your work or other regular daily activities as a result of your ph ...

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New Techniques for Health Outcomes Measurement and Evaluation

August 18th – 20th, 2014 | Boston, MA

Dr. Ware presented his annual lecture entitled “New Techniques for Health Outcomes Measurement and Evaluation” at the Measurement, Design, and Analysis Methods for Health Outcomes Research course held from August 18, 2014 to August 20, 2014 at the Harvard School of Public Health. The lecture covered noteworthy conceptual and methodological developments in patient-reported outcomes (PRO) measurement, advantages of standardization (in both content, and underlying metrics), advances in psychometric methods and norm-based scoring (for both generic and disease-specific PROs), examples of improved electronic data capture and connectivity, and the future of more comprehensive and more practical PRO information systems in health care. Dr. Ware’s afternoon workshops during the Harvard course addressed “Advances in Integrating Generic and Disease-Specific Assessments and Making them More Efficient and Useful.” Objectives included discussing how both the content and scoring of disease-specific QOL impact measures can be standardized, how to evaluate improvements in disease-specifi8c and generic QOL survey ...

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Health-Related Quality of Life Assessment – State of the Art 2014: Lecture and Smoking-specific Outcomes Research Workshop

January 27th – 28th, 2014 | Group R&D, British American Tobacco (Investments) Ltd., Southampton, UK

Dr. Ware presented an invited lecture covering noteworthy milestones in the history of patient-reported outcomes (PRO) including a new generation of standardized disease-specific PROs, the QOL Disease-specific Impact Scale (QDIS®), that fill the gap between widely-used disease-specific measures that do not measure quality of life (QOL) and generic QOL measures that do not measure disease-specific outcomes.  In his workshop, Dr. Ware showed how both the content and scoring of condition-specific QOL impact measures, including measures of the QOL impact attributed to smoking, can be standardized across conditions using QDIS and how norm-based scoring can make interpretation much easier. Dr. Ware also presented examples of how to test whether survey respondents who have multiple conditions such as arthritis and asthma are able to make valid ratings of the QOL impact of each condition using QDIS.  Another consideration of particular importance in smoking research that focuses on otherwise well smokers (free of chronic health problems) is t ...

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FDA Workshop on Modeling and Statistical Methods for the Regulatory Assessment of Tobacco Products

December 5-6, 2013 | Food and Drug Administration (FDA), Rockville, MD

In a session on Population Models to Account for Quality-of-Life Measures, Dr. Ware presented a talk entitled, "Improving Quality of Life Outcomes Measures for Use in Tobacco Research: Lessons from Population Surveys and Clinical Research." Presentations in this session and a panel discussion covered methods for assessing changes in quality-of-life and other measures, which demonstrate the effects on morbidity due to tobacco use. The conference, hosted by the Center for Tobacco Products (CTP), was intended to stimulate discussion among academic researchers, industry participants, FDA scientists, and other stakeholders on the challenges and opportunities associated with using computer statistical modeling to assess the effects of tobacco products on population health.

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2013 NIH Annual IPPCR Course

December 2nd, 2013 | Bethesda, MD

Dr. Ware presented the annual lecture "Quality of Life Update – 2013” for the "Introduction to the Principles and Practice of Clinical Research" course offered by the National Institutes of Health on December 3rd. This was Dr. Ware's 15th IPPCR lecture; it focused on the advantages of integrating disease-specific and generic patient reported outcome (PRO) measures while using norm-based scoring to interpret both types of PRO measures. Plans for forthcoming NIH Clinical and Translational Science Award (CTSA) network presentations are intended to create a "Virtual University" that will include the Clinical Center’s core clinical research curriculum. More information on the NIH course can be found here.

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International Society for Pharmacoeconomics and Outcomes Research (ISPOR) 16th Annual European Congress

November 2-6, 2013 | Dublin, Ireland

A presentation entitled "The Validity of Quality Of Life Attributions to Specific Diseases: A Multitrait-Multimethod Comparison" was delivered by Dr. Rick Guyer of JWRG at the 16th Annual ISPOR European Congress in Dublin Ireland on November 4th, 2013. This study tested the convergent and discriminant validity of disease-specific quality of life (QOL) impact attributions using the Campbell and Fiske (1959) multitrait-multimethod (MTMM) approach. The study expands beyond previous empirical tests of the new Quality of Life Disease Impact Scale (QDIS®) by focusing on adults with three comorbid conditions. Results strongly support the convergent and discriminant validity of QDIS survey measures of disease-specific QOL impact attributed specifically to hip/knee, cardiovascular, and pulmonary conditions.

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Inaugural Albert Sherman Center Scientific Symposium, University of Massachusetts Medical School

October 10th, 2013 | Worcester, MA

Dr. Ware lectured on "The Impact of Health Care: Quantifying the Voice of the Patient," one of four presentations during the Albert Sherman Center Inaugural Scientific Symposium at the UMass Medical School on October 10th, 2013. Other speakers included Joseph Goldstein and Michael Brown (University of Texas Southwestern Medical Center) who summarized their Nobel Prize winning discoveries in 2-part lectures entitled: "A Century of Cholesterol and Coronaries." Robert Langer (Massachusetts Institute of Technology) lectured on "Controlled Drug Delivery and Tissue Engineering for Angiogenesis Inhibitors." Dr. Ware demonstrated advances in psychometric methods and Internet-based surveys that are fundamental to understanding patient functioning and well-being outcomes in clinical research and practice.

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29th International Pharmacoepidemiology (ICPE) Conference

August 25th - 28th, 2013 | Montreal, Canada

Including the patient’s voice in measuring risks and benefits was the topic of the plenary presentation by Dr. Ware and others at the 29th International Conference on Pharmacoepidemiology and Therapeutic Risk Management, Montreal Convention Center, Montreal, Canada on August 25th, 2013. The goal of the presentations was to present new initiatives to better understand the patient’s voice regarding the safety and effectiveness of pharmaceutical products in real world use. Dr. Ware opened the session with a presentation entitled “Improving Disease-specific and Generic Patient-reported Outcome (PRO) Measures to Better Capture the Beneficial and Adverse Effects of Pharmaceutical Therapies” in which a comprehensive endpoint model was applied to both validating PROs and evaluating treatment PRO benefits. Included was an example of the construct (convergent-discriminant) validation of the Quality of Life Disease Impact Scale (QDIS®), a new approach to standardizing both the content and scoring of the QOL impact attributed to specific conditions. More informa ...

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Measurement, Design, and Analysis Methods for Health Outcomes Research

August 19th - 21st, 2013 | Boston, MA

Dr. Ware presented his annual lecture entitled “New Techniques for Health Outcomes Measurement and Evaluation” at the Measurement, Design, and Analysis Methods for Health Outcomes Research course held August 19, 2013 to August 21, 2013 at the Harvard School of Public Health. The lecture covered noteworthy conceptual and methodological developments, advantages of standardization (in both content and underlying metrics), advances in psychometric methods and norm-based scoring (for both generic and disease-specific PROs), examples of improved electronic data capture and connectivity, and the future of more comprehensive and more practical PRO information systems in health care. Dr. Ware’s afternoon Harvard course workshops addressed “Integrating and Improving Generic and Disease-Specific Assessments.” Objectives included discussing how both the content and scoring of disease-specific QOL impact measures can be standardized, how to evaluate improvements in QOL impact survey efficiency, and how reduced respondent burden can be achieved without sacrificing reliability and validity. More information can be ...

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2012 NIH Annual IPPCR Course

December 3rd, 2012 | Bethesda, MD

Dr. Ware presented his annual lecture "Quality of Life Update – 2012" for the "Introduction to the Principles and Practice of Clinical Research" course offered by the National Institutes of Health on December 3rd. This was Dr. Ware's 14th IPPCR lecture. He focused on advances in integrating disease-specific and generic PROs while illustrating comprehensive generic and disease-specific patient reported outcomes (PRO) measurement. More information on attending the course directly, or remotely can be found here.

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ISPOR 15th Annual European Congress

November 3-7, 2012 | Berlin, Germany

This presentation entitled “Standardizing the Metric and Increasing the Efficiency of Physical Functioning Outcomes Measurement” demonstrated that improved adaptive survey logic (ASLX®) combined with improved physical functioning survey items can achieve the following improvements: a standardized scale that maintains backward comparability with legacy generic physical functioning measures; reductions in respondent burden of 50% in comparison with routine CAT surveys; reduced percentage scoring at the highest score level (ceiling); and improved range over which reliable measurement can be achieved, including for those with mild impairment. The presentation was made by Dr. Rick Guyer of JWRG on Tuesday, November 6th at the ISPOR 15th Annual European Congress.

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ISOQOL 19th Annual Conference

October 24-27, 2012 | Budapest, Hungary

Dr. Ware presented a paper entitled “Evaluation of a More Comprehensive Survey Item Bank for Standardizing Disease-Specific Impact Comparisons across Chronic Conditions”, at the ISOQOL Annual Conference. The paper presented a new Quality of Life Disease Impact Scale (QDIS®) developed by JWRG to fill the gap between widely-used disease-specific and generic patient-reported outcomes (PRO) measures. Preliminary evaluations of QDIS psychometric properties and empirical validity were reported. QDIS metrics standardized across conditions were shown to be sound psychometrically and valid. Combined with norm-based scoring and an integrated “dashboard” display, QDIS allows for easier interpretation of both disease-specific and generic health outcome measures. Tests of the usefulness of such combined information in clinical research and practice are warranted. In addition, Dr. Ware’s afternoon workshop at ISOQOL addressed “Integrating and Improving Generic and Disease-Specific Assessments.” Objectives included showing how both the content and sco ...

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World Health Summit

October 21-24, 2012 | Berlin, Germany

Dr. Ware gave a keynote speech as part of the special satellite session “Information Technology for Health” at the prestigious World Health Summit held in Berlin, Germany, on October 24, 2012. His topic was information technology advances enabling standardization of patient-reported outcome (PRO) metrics and more comprehensive (integrated disease-specific and generic PROs), better integrated (traditional clinical and PRO information) and more efficient (more practical and more precise) PRO assessment systems.

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