Who We Are
Core Values
The International Society for Quality of Life Research (ISOQOL) is a global community of researchers, clinicians, health care professionals, industry professionals, consultants, and patient research partners advancing health related quality of life research (HRQL). Together, we are creating a future in which patient perspective is integral to health research, care and policy.
Mission
The mission of ISOQOL is to advance the science of quality of life (QOL) and related patient-centered outcomes (PCO) in health research, care and policy.
Vision
ISOQOL will improve QOL for people everywhere by creating a future in which their perspective is integral in health research, care and policy.
Patient Engagement
ISOQOL supports the patient voice in QOL and patient-reported outcomes (PRO) research. Patient engagement initiatives are intended to align ISOQOL’s priorities and infrastructure with efforts to establish best practices in patient engaged QOL research and create educational efforts and model programs that promote best practices and fulfill ISOQOL’s mission.
Global Reach
Data pulled September 2019
Members by Region
North America
Europe
Oceania
South America
Africa
Asia & Middle East
Countries Represented by ISOQOL
A Brief History
ISOQOL’s roots are found in the publication of the journal, Quality of Life Research (QLR), first published in February 1992. Two years later, ISOQOL was officially established as a nonprofit society whose purpose was to “promote the exchange of information about QOL and its investigation throughout the world.” To this day, ISOQOL endorses QLR as “an official journal of ISOQOL.”
The ISOQOL Annual Conference
The Inaugural ISOQOL Annual Conference convened on 3 February 1994 in Brussels, Belgium. The two-day meeting was attended by over 200 participants. The conference showcased 65 oral presentations and 72 poster presentations whose abstracts were published in Volume 3, Issue 1 of QLR.
During the conference, ISOQOL was formed in an inaugural business meeting open to the public. During this meeting, Drs. Donald Patrick (President) and Robert Kaplan (Vice President) led discussions regarding the society’s mission, name, bylaws, journal, functions, membership and future conferences. An official call for members was released the following August.
Growth and Expansion
Membership grew to include roughly 400 members by the year 2000. During this time, ISOQOL expanded its mission statement to say:
“The mission of ISOQOL is to advance the scientific study of HRQL and other PCOs to identify effective interventions, enhance the quality of health care and promote the health of populations.”
Membership and the field of HRQL research continued to grow. Today, membership has more than doubled since 2000. ISOQOL boasts multiple yearly events and numerous educational initiatives. In 2017, ISOQOL launched the Journal of Patient-Reported Outcomes (JPRO). JPRO is an open access journal owned and endorsed by ISOQOL.
Looking to the Future
In 2015, membership growth prompted ISOQOL Leadership to reevaluate ISOQOL’s stance as a society. In the following years, the Board added the patient research partner (PRP) membership type, revised the ISOQOL mission statement to include health care and policy, created a vision statement and patient engagement statement, and developed a five-year strategic plan.
Leadership
Board of Directors
While the governance of ISOQOL falls to its Board of Directors, the Society also relies on committees, task forces, panels and SIG Leaders to provide guidance and recommendations on specific topics.
President
Lori Frank, PhD
RAND Corporation
Virginia, United States
Term: 2019 – 2021
Past President
Jose (Chema) M. Valderas, MD MPH PhD
University of Exeter
United Kingdom
Term: 2019 – 2020
Secretary-Treasurer
Joan J. Branin, PhD
Center for Health and Aging
California, United States
Term: 2017 – 2021
Directors-at-Large
Antoine Regnault, PhD
Modus Outcomes
France
Term: 2017 – 2020
Josephine M. Norquist, MS
Merck Sharp & Dohme Corp.
Pennsylvania, United States
Term: 2017 – 2020
Kevin P. Weinfurt, PhD
Duke University
School of Medicine
North Carolina, United States
Term: 2017 – 2020
Kim Cocks, PhD
Adelphi Values
United Kingdom
Term: 2018 – 2021
I-Chan Huang, PhD
St. Jude Children’s Research Hospital
Epidemiology & Cancer Control
Tennessee, United States
Term: 2018 – 2021
Karon F. Cook, PhD
FeralScholars.Net
Texas, United States
Term: 2018 – 2021
Kirstie L. Haywood, DPhil BSc (Hons)
University of Warwick
Warwick Medical School
Warwick Research in Nursing
United Kingdom
Term expires: 2018 – 2021
Antonia V. Bennett, PhD
University of North Carolina at Chapel Hill
Department of Health Policy and Management
North Carolina, United States
Term: 2019 – 2022
Nalin Payakachat, BPharm MS PhD
University of Arkansas for Medical Sciences
College of Pharmacy
Arkansas, United States
Term: 2019 – 2022
ISOQOL Elections
The Board of Directors appoints a Nominations Committee of at least three members, one of whom is the Immediate Past President or President-Elect.
A call for nominations is opened to the membership, after which a ballot of nominees is presented to the membership.
Newly elected Board members take office at the conclusion of the Annual Business Meeting held during the ISOQOL Annual Conference.
Nominations are now closed.
Past Presidents
Presidents
Donald L. Patrick, PhD MSPH
Term: 1993 – 1994
Robert Kaplan, PhD
Term: 1994 – 1996
Monika Bullinger, PhD
Term: 1996 – 1998
Sharon Wood-Dauphinee, PhD
Term: 1998 – 2000
Ivan Barofsky, PhD
Term: 2000 – 2001
David Osoba, MD
Term: 2001 – 2002
Mirjam A. G. Sprangers, PhD
Term: 2002 – 2003
Albert W. Wu, MD MPH
Term: 2003 – 2004
David Feeny, PhD
Term: 2004 – 2005
Peter Fayers, PhD
Term: 2005 – 2006
Madeleine T. King, PhD
Term: 2006 – 2007
Donna L. Lamping, PhD
Term: 2007 – 2008
Neil K. Aaronson, PhD
Term: 2008 – 2009
Diane L. Fairclough, DrPH
Term: 2009 – 2010
Carol M. Moinpour, PhD
Term: 2010 – 2011
Bryce B. Reeve, PhD
Term: 2011 – 2013
Galina Velikova, MD PhD FRCP
Term: 2013 – 2015
Claire Snyder, PhD
Term: 2015 – 2017
Journal Editors-in-Chief
Journal of Patient-Reported Outcomes (JPRO)
Quality of Life Research Journal (QLR)
David Feeny, PhD
McMaster University
Department of Economics
Ontario, Canada
Term: 2017 – January 2021
Ron D. Hays, PhD
University of California, Los Angeles
California, United States
Term: 2020 – January 2024
Jan R. Boehnke
University of Dundee
United Kingdom
Term: 2017 – January 2023
Claudia Rutherford, PhD
University of Sydney
Quality of Life Office
New South Wales, Australia
Term: 2019 – January 2025
Past Editors-in-Chief
JPRO
Dennis Revicki, PhD
Term: 2017 – 2020
QLR
Maurice J. Staquet, MD MS
Term: 1993 – 1999
Neil K. Aaronson, PhD
Term: 1999 – 2005
Ron D. Hays, PhD
Term: 2005 – 2009
Dennis Revicki, PhD
Term: 2009 – 2015
Carolyn E. Schwartz, ScD
Term: 2009 – 2017
Frans Jeroen Oort, PhD
Term: 2015 – 2019
Committees
Committees are charged with oversight of ongoing activities driven by the Strategic Plan and direction from the Board. ISOQOL members are encouraged to serve on a committee to lend their expertise and their voice to the society.
Calls for committee member volunteers are released in April or May every year. If you are interested in serving on a committee below, visit the Volunteer Page for details.
Advisory Council of Past Presidents (ACPP)
Description: The ACPP serves as a resource to the President, Executive Committee and Board of Directors, providing institutional memory and input based on their experience.
Members: All living past presidents of ISOQOL who are members in good standing are automatically members of the council.
Chairs: Two past presidents serve as Co-Chairs for a two-year term with staggering term dates. Each past president serving as Co-Chair has the option to renew his/her term for one additional term.
Bryce B. Reeve, PhD
Duke University
School of Medicine
North Carolina, United States
Term: 2019 – 2020 (Second Term)
Galina Velikova, MD PhD FRCP
University of Leeds
Medical Oncology
United Kingdom
Term: 2018 – 2021 (Second Term)
Annual Conference Program Committee (AC Committee)
Description: The AC Committee manages the scientific content of the ISOQOL Annual Conference. They develop the theme, invite plenary speakers, and solicit presentations to develop a diverse scientific program. This committee is charged to ensure the highest quality educational program and promote participation.
Members: This committee consists of two Co-Chairs, one Local Representative, one Symposium Chair and a Board Liaison. The Local representatives and Symposium Chair are appointed by the Co-Chairs with approval of the Board Liaison.
Chairs: Program Chairs are appointed by the Executive Committee a minimum of 1.5 years in advance.
Lotte Haverman, PhD
Emma Children’s Hospital – Academic Medical Centre
Netherlands
Term: 2020 Co-Chair
Tom Willgoss, PhD MSc
Roche Products Ltd
United Kingdom
Term: 2020 Co-Chair
Audit Committee
Description: This committee is comprised of Executive Committee members. The Audit Committee reviews the year-end audit report and tax filing. The Secretary-Treasurer then presents the year-end audit report to the Board of Directors.
Members: This committee consists of the ISOQOL President and either the President-Elect or the Past President.
Chair: The ISOQOL Treasurer serves as the Committee Chair.
Joan J. Branin, PhD
Center for Health and Aging
California, United States
Term: 2017 – 2020
Collaboration Committee
Description: The Collaboration Committee works to forge mutually beneficial collaborations with external organizations to advance the field and position of ISOQOL as the leader in integrating HRQL research. They also evaluate, define and pursue collaborative opportunities
Members: This committee relies on member volunteers. All members are asked to serve a two-year term.
Chairs: This committee has two Co-Chairs with staggering term dates beginning after the committee’s first two years.
Sandra Nolte, PhD
Charité – Universitätsmedizin Berlin
Department of Psychosomatic Medicine
Center for Internal Medicine and Dermatology
Germany
Term: 2018 – 2021
Albert W. Wu, MD MPH
Johns Hopkins University
Maryland, United States
Term: 2018 – 2020
Communications Committee
Description: The Communications Committee works to increase awareness, recognition and support of ISOQOL to various stakeholders/audiences through the development and maintenance of a communication plan and outreach strategies.
Members: This committee relies on member volunteers. All members are asked to serve a two-year term.
Education Committee & Subcommittees
Description: The Education Committee manages educational activities for ISOQOL. Projects this committee develops include, but are not limited to webinars, workshops, the mentor/mentee program, education courses, etc.
Members: This committee relies on member volunteers and is composed of four subcommittees. All members are asked to serve a two-year term.
Education Committee Chairs: This committee and each of its subcommittees have two Co-Chairs with staggering term dates.
Diana Rofail, PhD CPsychol MBA
Regneron
New York, United States
Term: 2018 – 2020
Kathrin I. Fischer, MSc
Charite Universitatsmedizin Berlin
Germany
Term: 2019 – 2021
IPCOR Course Subcommittee:
Josephine M. Norquist, MS
Merck Sharp & Dohme Corp.
Pennsylvania, United States
Term: 2019 – 2020
Elizabeth (Betsy) Tschosik, PhD
Genentech
Illinois, United States
Term: 2019 – 2021
IPRO Course Subcommittee:
Nalin Payakachat, BPharm MS PhD
University of Arkansas for Medical Sciences
College of Pharmacy
Arkansas, United States
Term: 2018 – 2020
Somali M. Burgess, PhD
Evidera
California, United States
Term: 2019 – 2021
Measuring What Matters Symposium Topic Selection Subcommittee:
Jennifer Petersen, MPH
Genentech, Inc.
California, United States
Term: 2018 – 2020
Susan J. Bartlett, PhD
McGill University
Centre for Outcomes Research Evaluation
Quebec, Canada
Term: 2019 – 2021
Webinar Subcommittee:
Xin (Shelley) Wang, MD MPH
University of Texas
MD Anderson Cancer Center
Texas, United States
Term: 2018 – 2020
Kedar K. V. Mate, PT PhD
Mayo Clinic
Quebec, Canada
Term: 2019 – 2021
Measuring What Matters Symposium Committee
Description: The Measuring What Matters Committee develops a 1.5-day symposium targeting industry partners, clinicians, patients and government agencies. The program addresses important considerations to these stakeholders when developing a patient-reported outcome measurement strategy to “measure what matters.”
Chairs: This committee has two or three Co-Chairs each with a one year term.
Michelle K. White, PhD
Optum Patient Insights
Rhode Island, United States
Term: 2019 – 2020
Linda M. Nelsen, MHS
GlaxoSmithKline
Pennsylvania, United States
Term: 2019 – 2020
Paivi Miskala, MSPH PhD
Merck and Co., Inc.
Maryland, United States
Term: 2019 – 2020
Membership Committee
Description: The Membership Committee works to expand, recruit and maintain membership in general and in underrepresented groups and/or regions.
Members: This committee relies on member volunteers. All members are asked to serve a two-year term.
Chairs: This committee has two Co-Chairs with staggering term dates beginning after the committee’s first two years.
Canhua Xiao, PhD RN FAAN
Yale University
Connecticut, United States
Term: 2018 – 2021
Richard L. Skolasky, ScD
Johns Hopkins University
Maryland, United States
Term: 2018 – 2020
Nominations Committee
Description: The Nominations Committee plays an active role in identifying potential Director-at-Large candidates, as well as the officer positions of President-Elect and Secretary-Treasurer to the Board of Directors. The committee presents the slate of candidates to the ISOQOL Board of Directors for approval. Once approved, the slate of candidates is sent to membership for vote and confirmation. The committee also reviews and recommends candidates for Honorary Membership status to the Board of Directors.
Members: Members are composed of one member from each Board Council and are recommended by the Executive Committee. All members serve a two-year term, with staggering term dates.
Chair: The chair position is filled by either the President-Elect or the Past President.
Jose (Chema) M. Valderas, MD MPH PhD
University of Exeter
United Kingdom
Term: 2019 – 2020
Standards & Best Practices Committee
Description: The Standards & Best Practices Committee advances the scientific study of HRQL and other PCOs by leading projects to develop standards and best practices, as well as create tools to promote implementation of recommendations. The committee also serves as the custodian of ISOQOL standards and best practices documents, including updates as needed.
Members: Members are composed of one representative from the Advisory Council of Past Presidents and volunteers. Members are asked to serve a two-year term, with staggering term dates.
Past Chair:
Veronique Sebille, PhD
University of Nantes
France
Term: 2017 – 2020
Chair:
Lori D. McLeod, PhD
RTI Health Solutions
North Carolina, United States
Term: 2018 – 2021
Co-Chairs Elect:
Montserrat Ferrer, MD PhD MPU
Hospital Del Mar Research Institute
Health Services Research Unit
Spain
Term: 2018 – 2022
Task Forces
Task forces are charged with oversight of a time-limited activity identified by the Board and/or the 2017-2022 Strategic Plan. ISOQOL members are encouraged to serve on task forces to lend their expertise and their voice to the Society.
Proxy Task Force
Description: The aim of the ISOQOL Best Practices for the Collection, Analysis and Reporting of Proxy Data for Patient-Reported Outcomes in Adults Task force (Proxy Taskforce) is to develop evidence-based guidelines to improve the design, collection, analysis and reporting of proxy assessment for adult patient populations.
Co-Chairs:
Jessica Roydhouse, PhD
University of Tasmania
Tasmania, Australia
Rebecca Mercieca-Bebber
University of Sydney
NHMRC Clinical Trials Centre
New South Wales, Australia
Adviser:
Madeleine T. King, PhD
University of Sydney
Quality of Life Office
New South Wales, Australia
Members:
Ana Maria Rodriguez, PhD MSc PT
McGill University
School of Rehabilitation
Spain
Andrea Ireland, PhD
Janssen Pharmaceutical
New Jersey, United States
Angelos P. Kassianos, PhD
University College London
United Kingdom
Cindy J. Nowinski, MD PhD
Northwestern University
Feinberg School of Medicine
Illinois, United States
Claudia Rutherford, PhD
University of Sydney
Quality of Life Office
New South Wales, Australia
Diane L. Fairclough, DrPH
Colorado School of Public Health
Colorado, United States
Emre Yucel, PhD MPPE MS MIBS
AMGEN
California, United States
Henrik R. Eshoj, PhD
Odense University Hospital
Quality of Life Research Center
Denmark
Katarzyna Wac, PhD
University of Geneva
QoL Technologies Lab
Switzerland
Matthew Cohen, PhD
University of Delaware
Delaware, United States
Nadia Corsini
University of South Australia
South Australia, Australia
Sara Perez
Complutense University of Madrid
Spain
Veronique Sebille, PhD
University of Nantes
France
Judging Panels
Judging panels are charged with reviewing award applications/nominations and recommending deserving recipients to the Board of Directors. ISOQOL members are encouraged to serve on a judging panel to lend their expertise and their voice to the Society.
President’s Award
Description: The goal of this award is to recognize outstanding contributions to the advancement of the HRQL research field in one or more of the following areas:
- Education of professionals, patients or lay individuals about the value of HRQL
- Promotion or execution of HRQL research and/or other scholarly activities
- Facilitating or furthering policy initiatives that impact HRQL
Members: Awardees are reviewed by the President, selected by the Executive Committee and endorsed by the Board of Directors.
Emerging Leader Award
Description: The goal of this award is to recognize young professionals who have shown exceptional leadership skills and potential by playing a key role in the successful completion of a specific ISOQOL activity, task or project.
Members: This judging panel consists of two ACPP members, two Board members nominated by the Executive Committee and the most recent award recipient. Each member, excluding the previous award recipient, will serve two years with staggering term dates.
Travel Scholarships
Description: The Travel Scholarship Program was developed to increase the opportunity for patient research partners, members in the early stages of their careers and for members from developing countries to attend the Annual Conference by providing funds to help defray travel costs. There are currently three types of travel scholarships available:
- Patient Research Partner
- Developing Country
- Student and New Investigator
Help ISOQOL give more scholarships
Members: This judging panel consists two regular ISOQOL members, one special ISOQOL member, one Patient Engagement SIG member and one New Investigator SIG member. All representatives serve a two year term with approximately half of the panel terming off the panel each year.
Outstanding Poster Awards
Members: This judging panel consists of two past AC Committee chairs, two upcoming AC Committee chairs and one Education Committee Chair.
Student/New Investigator Poster and Oral Presentation Awards
Description: Each year, ISOQOL recognizes the best overall oral and poster presentations at the Annual Conference made by full-time students and new investigators in the early stages of their career in HRQOL research. Abstracts submitted to the Annual Conference by students and new investigators are considered for these awards.
Members: This judging panel consists of two Education Committee members, the New Investigator SIG chair and an Education Council Liaison from the Board.
The International Society for Quality of Life Research (ISOQOL) is a global community of researchers, clinicians, health care professionals, industry professionals, consultants, and patient research partners advancing health related quality of life research (HRQL).
Together, we are creating a future in which patient perspective is integral to health research, care and policy.