Who We Are

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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 December 2022

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 the Springer-owned QLR.

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.

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.

Looking to the Future

As a result of the Society’s growth, ISOQOL launched its rebranding initiative and a redesigned website, focusing on global reach and collaboration. In 2021, ISOQOL expanded its educational offerings with the launch of an e-learning platform that hosts courses, webinars and virtual symposia.

ISOQOL Leadership developed a new five-year strategic plan in 2024 to meet the diverse needs of members while increasing awareness, expanding outreach, and advancing QOL science and PCOs in health research, care and policy. The plan focuses on impact, relevance and engagement, with organizational excellence as a foundational goal to continue moving the Society forward.

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
Josephine M. Norquist, MS
Merck Sharp & Dohme Corp.
Pennsylvania, United States
Term: 2023 – 2025

Past President
Joanne Greenhalgh, PhD
University of Leeds
School of Sociology and Social Policy
United Kingdom
Term: 2023 – 2024

Secretary-Treasurer
Christopher B. Forrest, MD PhD
The Children’s Hospital of Philadelphia
Pennsylvania, United States
Term: 2021 – 2024

Directors-at-Large

Tolulope T. Sajobi, PhD
University of Calgary
Department of Community Health Sciences
Alberta, Canada
Term: 2021 – 2024

Kathryn E. Flynn, PhD
Medical College of Wisconsin
Wisconsin, United States
Term: 2021 – 2024

Elizabeth J. Gibbons, MSc
Evidera
United Kingdom
Term: 2021 – 2024

Elizabeth J. Unni, PhD​
Touro College of Pharmacy
New York, United States
Term: 2022 – 2025

Lene Kongsgaard Nielsen, MD PhD
Quality of Life Research Center
Odense University Hospital
Denmark
Term: 2022 – 2025

Christopher Sidey-Gibbons, PhD
The University of Texas MD Anderson Cancer Center
Texas, United States
Term: 2023 – 2026

Adesola C. Odole, PhD
University of Ibadan
Nigeria
Term: 2023 – 2026

Tom Willgoss, PhD MSc
Roche
United Kingdom
Term: 2023 – 2026

Federal Liaison

Roxanne E. Jensen, PhD​
National Cancer Institute
Maryland, United States
Term: 2022 – 2025

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 Open
Visit www.isoqol.org/membership/#volunteer for nomination instructions, a list of open positions and their corresponding duties.

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

Jose (Chema) Valderas, MD MPH PhD
Term: 2017 – 2019

Lori Frank, PhD
Term: 2019 – 2021

Joanne Greenhalgh, PhD
Term: 2021 – 2023

Journal Editors-in-Chief 

Journal of Patient-Reported Outcomes (JPRO)

Quality of Life Research Journal (QLR)

Rasa Ruseckaite, PhD MCompSc BCompSc
Monash University
Melbourne, Australia
Term: 2022 – January 2026

Elizabeth J. Unni, PhD
Touro College of Pharmacy
New York, United States
Term: 2024 – December 2028

Jan R. Boehnke
University of Dundee
United Kingdom
Term: 2017 – January 2024

Brittany Lapin, PhD MPH
Cleveland Clinic
Ohio, United States
Term: 2023 – January 2027

Past Editors-in-Chief

JPRO

Dennis Revicki, PhD
Term: 2016 – 2020

David Feeny, PhD
Term: 2016 – 2021

Ron D. Hays, PhD
Term: 2020 – 2022

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

Memorial

The International Society for Quality of Life Research (ISOQOL) honors our departed members for their contributions.

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.

Claire Snyder, PhD
Johns Hopkins School of Medicine
Maryland, United States
Term: 2022 – 2024

Mirjam A.G. Sprangers, PhD
Amsterdam University Medical Centers
Netherlands
Term: 2022 – 2025

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.

Dagmara Kuliś, MA
EORTC
Belgium
Term: 2024 Co-Chair

Holger Muehlan, PhD
Department Health & Prevention
University of Greifswald
Germany
Term: 2024 Co-Chair

Learn More

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.

Christopher B. Forrest, MD PhD
The Children’s Hospital of Philadelphia
Pennsylvania, United States
Term: 2021 – 2024

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.

Past Chair:

Bellinda L. King-Kallimanis, PhD
LUNGevity Foundation
Florida, United States
Term: 2021 – 2024

Chair:

Claire Snyder, PhD
Johns Hopkins School of Medicine
Maryland, United States
Term: 2022 – 2025

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.

Past Chair:

Calvin N. Ho, PhD
AstraZeneca
Maryland, United States
Term: 2022 – 2024

Chair:

Manraj N. Kaur, PT PhD
Harvard Medical School
Massachusetts, United States
Term: 2022 – 2025

Learn More

Education Committee & Subcommittees

Description: The Education Committee advances the scientific study of health related quality of life and other patient-centered outcomes by reviewing submitted/proposed projects to develop the ISOQOL education program. The Committee will oversee all educational content for ISOQOL.

Members: This committee relies on member volunteers and is composed of two subcommittees. All members are asked to serve a two-year term.

Past Chair:

Elizabeth (Betsy) Tschosik, PhD
Genentech
Illinois, United States
Term: 2021 – 2024

Chair:

Piper (Pip) Fromy, PhD
SeeingTheta
France
Term: 2022 – 2025

Chair-Elect:

Kim Cocks, PhD
Adelphi Values
United Kingdom
Term: 2023 – 2026

eLearn Strategy Subcommittee Members:

Elizabeth (Betsy) Tschosik, PhD
Genentech
Illinois, United States
Term: 2023 – 2024

Piper (Pip) Fromy, PhD
SeeingTheta
France
Term: 2023 – 2025

Topic Selection Subcommittee Members:

Kim Cocks, PhD
Adelphi Values
United Kingdom
Term: 2023 – 2026

Xin (Shelley) Wang, MD MPH
UT MD Anderson Cancer Center
Texas, United States
Term: 2022 – 2024

Ian Kudel, PhD
Varian Medical Systems
New York, United States
Term: 2022 – 2024

Learn More

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 co-chairs both with a one year term.

Brittany Lapin, PhD MPH
Cleveland Clinic
Ohio, United States
Term: 2023 – 2024

Deborah M. Miller, PhD LISW-S
Cleveland Clinic
Ohio, United States
Term: 2023 – 2024

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.

Past Chair:

Tom Willgoss, PhD MSc BA
Roche
United Kingdom
Term: 2021 – 2024

Chair:

Nalin Payakachat, BPharm MS PhD
Eli Lilly and Company
Arkansas, United States
Term: 2022 – 2025

Learn More

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.

Joanne Greenhalgh, PhD
University of Leeds
School of Sociology and Social Policy
United Kingdom
Term: 2023 – 2024

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:

Elizabeth J. Unni, PhD
Touro College of Pharmacy​
New York, United States
Term: 2021 – 2024

Chair:

Dagmara Kulis, MA
EORTC
Belgium
Term: 2022 – 2025

Learn More

Task Forces

Task forces are charged with oversight of a time-limited activity identified by the Board and/or the 2024-2028 Strategic Plan. ISOQOL members are encouraged to serve on task forces to lend their expertise and their voice to the Society.

Abstract Submission Review Task Force

Description: The Abstract Submission Review Task Force is tasked by leadership to examine the abstract submission and review process for the Annual Conference. Their findings will be submitted as a report to the board with any proposed changes.

Chair:

Lene Kongsgaard Nielsen, MD PhD
Quality of Life Research Center
Odense University Hospital
Denmark

Members:

Deborah M. Miller, PhD LISW-S
The Cleveland Clinic Foundation
Ohio, United States

Kathleen J. Yost, PhD
Mayo Clinic
Minnesota, United States

Susan Bartlett, PhD
McGill University
Quebec, Canada

Virtual Symposia Task Force

Description:

The Virtual Symposia Task Force is tasked with developing an online annual symposia program.

Membership engagement at the virtual MWM is extremely high and could potentially be a great addition to ISOQOL’s education program. This would also be a great revenue stream to support other ISOQOL initiatives.

The new program will either build off the existing Measuring What Matters Symposium or use the existing model as a foundation to build an independent program.

Members:

Xin “Shelley” Wang, MD MPH
UT MD Anderson Cancer Center
Texas, United States

Nalin Payakachat, BPharm MS PhD
Eli Lilly and Company
Arkansas, United States

Catherine Bottomley, MPharm PhD
Vitaccess
United Kingdom

Rob Arbuckle, MSc
Adelphi Values
United Kingdom

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

How to apply

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.

How to apply

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

How to apply

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
Description: The Outstanding Poster Finalists are designated to the top six poster submissions from the Annual Conference that received the highest scores during the peer review process. All abstracts submitted as posters are automatically considered for this designation. During the Annual Conference, the judging panel scores the six presentations and names a winner for the Outstanding Poster Award.

How to apply

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.

How to apply

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.