Special Interest Groups

ISOQOL » SIGs

Regional Networks

Connect with professionals in your geographic area for networking, collaboration and local support.

Australia and New Zealand (ANZ)

This Regional Network fosters connections between local researchers in a geographically remote region of the world. We aim to support and prepare emerging researchers for international opportunities through collaborations, mentorships and other projects year-round.

Leadership

Past Chair
Claudia Rutherford, PhD
University of Sydney
Quality of Life Office
New South Wales, Australia
claudia.rutherford@sydney.edu.au

Chair
Rasa Ruseckaite, BCompSc MCompSc PhD
Monash University
School of Public Health and Preventive Medicine
Victoria, Australia
rasa.ruseckaite@monash.edu

Chair-Elect
Rebecca Mercieca-Bebber
University of Sydney
NHMRC Clinical Trials Centre
New South Wales, Australia
rebecca.mercieca@sydney.edu.au

Secretary/Treasurer
Natasha Roberts, BN(Hons)
Royal Brisbane and Women’s Hospital
Queensland, Australia
n6.roberts@hdr.qut.edu.au

Board Liaison
Kim Cocks, PhD
Adelphi Values
United Kingdom
kim.cocks@adelphivalues.com

Canada-PRO

This Regional Network unites researchers, clinicians, patients and decision makers with a common interest in promoting and harmonizing patient-reported outcomes (PRO) use in Canada. We invite you to join us in discussing methodological issues and developments, generating new ideas, and collaborating on projects for the advancement of PRO research and application.

Leadership

Past Chair
Sara Ahmed, PhD
McGill University
Quebec, Canada
sara.ahmed@mcgill.ca

Chair
Ayse Kuspinar, BSc(PT) MSc PhD
McMaster University
School of Rehabilitation Science
Ontario, Canada
kuspinaa@mcmaster.ca

Chair-Elect
Nora Fayed, PhD MSc OT
Queen’s University
School of Rehabilitation Therapy
Ontario, Canada
nora.fayed@queensu.ca

Board Liaison
Kevin P. Weinfurt, PhD
Duke University
School of Medicine
Department of Population Health Sciences
North Carolina, United States
kevin.weinfurt@duke.edu

Chinese PRO

This Regional Network focuses on promoting research and education of PROs for the Chinese population by connecting with international efforts related to research and application of PROs. We facilitate networking for Chinese researches by supporting emerging researchers online, through collaborations, and at ISOQOL events.

Leadership

Co-Chair
Ji-Qian Fang, PhD
Sun Yat-sen University
School of Public Health
People’s Republic of China
fangjq@mail.sysu.edu.cn

Co-Chair
Daniel Y.T. Fong, PhD
University of Hong Kong
School of Nursing
Hong Kong
dytfong@hku.hk

Board Liaison
Kevin P. Weinfurt, PhD
Duke University
School of Medicine
Department of Population Health Sciences
North Carolina, United States
kevin.weinfurt@duke.edu

Ibero America

This Regional Network promotes communication, interaction and collaboration between ISOQOL members residing in an Ibero American country. We aim to increase the presence of Ibero Americans in international discussions of QOL research by supporting researchers locally and abroad.

Leadership

Co-Chair
Monica Avila Pacheco, BPharm MPH PhD
Hospital Del Mar Medical Research Institute (IMIM)
Spain
mmavilap@gmail.com

Co-Chair
Pedro L. Ferreira, PhD
University of Coimbra
Centre for Health Studies and Research; School of Economics
Portugal
pedrof@fe.uc.pt

Board Liaison
Kevin P. Weinfurt, PhD
Duke University
School of Medicine
Department of Population Health Sciences
North Carolina, United States
kevin.weinfurt@duke.edu

Japan

This Regional Network aims to increase opportunities for Japanese professionals in HRQL to communicate and exchange valuable information. We facilitate collaborations on high-quality studies, create opportunities for information exchange, and disseminate the results with the Japanese research community as well as with wider Asian Pacific and global audiences.

Leadership

Co-Chair
Kojiro Shimozuma, MD PhD
Ritsumeikan University
College of Life Sciences
Department of Biomedical Sciences
Japan
k.shimozuma@gmail.com

Co-Chair
Kikuko Miyazaki, PhD
Kyoto University
Japan
miyazaki.kikuko@gmail.com

Board Liaison
Kevin P. Weinfurt, PhD
Duke University
School of Medicine
Department of Population Health Sciences
North Carolina, United States
kevin.weinfurt@duke.edu

United Kingdom and Ireland (UK and Ireland)

This Regional Network focuses on use of PROMs research in the United Kingdom and Ireland by fostering engagement between policymakers, clinicians, industry colleagues, patients and researchers. We invite you to join us online or in person at our annual PROMs conference and other ISOQOL events.

Leadership

Past Chair
Elizabeth J. Gibbons, MSc
Clinical Outcomes Solutions
United Kingdom
elizabeth.gibbons@clinoutsolutions.com

Chair
Anju Keetharuth, MA MBA PhD
University of Sheffield
School of Health and Related Research
United Kingdom
d.keetharuth@sheffield.ac.uk

Chair-Elect
Grace M. Turner, BSc MSc PhD
University of Birmingham
Institute of Applied Health Research
United Kingdom
g.turner.1@bham.ac.uk

Board Liaison
Kim Cocks, PhD
Adelphi Values
United Kingdom
kim.cocks@adelphivalues.com

Special Interest Groups

Connect with professionals who have a similar career focus.

Child Health SIG

This SIG unites professionals who share a common interest in the quality of life of children. We are open to new and interesting ideas that will foster improvements in child health and across the transition into early adulthood.

Leadership

Past Chair
Jeanne Landgraf, MA
HealthAct CHQ Inc.
Massachusetts, United States
jml@healthactchq.com

Chair
Nalin Payakachat, BPharm MS PhD
University of Arkansas
College of Pharmacy
Division of Pharmaceutical Evaluation and Policy
Arkansas, United States
npayakachat@uams.edu

Chair-Elect
Robert Arbuckle
Adelphi Values
United Kingdom
Rob.Arbuckle@adelphivalues.com

Board Liaison
Kirstie L. Haywood, DPHiL BSc (Hons)
University of Warwick
Warwick Medical School
Warwick Research in Nursing
United Kingdom
k.l.haywood@warwick.ac.uk

Health Preference Research SIG

This SIG promotes educational activities and scientific research related to health related preferences. We encourage our members to engage in organizational activities that support the growth and greater integration of health preference research.

Leadership

Co-Chair
Manraj N. Kaur, PT MSc PhD Candidate
McMaster University
Ontario, Canada
kaurmn@mcmaster.ca

Co-Chair
Richard L. Skolasky, ScD
Johns Hopkins Univeristy
Maryland, United States
rskolas1@jhmi.edu

Board Liaison
I-Chan Huang, PhD
St. Jude Children’s Research Hospital
Epidemiology & Cancer Control
Tennessee, United States
i-chan.huang@stjude.org

Industry SIG (I-SIG)

This SIG connects individuals from academia with professionals representing the pharmaceutical, biotechnology, medical device and consulting industries who share a common interest in the application of health related QOL research. We are interested in innovative methods and research related to COAs, including PROs.

Leadership

Co-Chair
Paivi Miskala, MSPH PhD
Merck Sharp and Dohme Corp.
Maryland, United States
paivi.miskala@merck.com

Co-Chair
Linda M. Nelsen, MHS
GlaxoSmithKline PLC
Pennsylvania, United States
linda.m.nelsen@gsk.com

Board Liaison
Josephine M. Norquist, MS
Merck Sharp & Dohme Corp.
Pennsylvania, United States
josephine_norquist@merck.com

Mixed Methods SIG

This SIG promotes the use of mixed methods research in the field of HRQL research by exploring the challenges and methodological solutions offered by this research paradigm, identifying opportunities for application of mixed methods research in the field, and defining good practice. Our ultimate aim is to share and learn best-practice methodologies that can be utilized to enhance the patient-centeredness of outcomes research.

Mixed Methods: Refers to techniques that combine elements of qualitative and quantitative approaches to research.

Leadership

Co-Chair
Skye P. Barbic, PhD OT
University of British Columbia
Department of Occupational Therapy
British Columbia, Canada
skye.barbic@ubc.ca

Co-Chair
Carla Dias-Barbosa, MSc
Evidera
United Kingdom
carla.dias-barbosa@evidera.com

Board Liaison
Kirstie L. Haywood, DPHiL BSc (Hons)
University of Warwick
Warwick Medical School
Warwick Research in Nursing
United Kingdom
k.l.haywood@warwick.ac.uk

New Investigators SIG

This SIG provides professional development opportunities for:

  • Graduate students
  • Postdoctoral fellows who have completed their doctorate in the past five years
  • Independent researchers who have recently transitioned to health related QOL research within the past five years

We provide early-career support to young professionals new to the field of HRQL research through a variety of online resources and in-person events.

Leadership

Co-Chair
Canhua Xiao, PhD RN FAAN
Yale University
School of Nursing
Connecticut, United States
canhua.xiao@yale.edu

Co-Chair
Laura C. Pinheiro, PhD MPH
Weill Cornell Medicine
New York, United States
lcp2003@med.cornell.edu

Board Liaison
Ida J. Korfage, PhD
Erasmus MC
University Medical Center
Netherlands
i.korfage@erasmusmc.nl

Patient Engagement (PE) SIG

This SIG aims to ensure the patient voice is represented in ISOQOL activities through the advancement of patient engagement in HRQL research.  Not only do we discuss ways to incorporate the patient voice in HRQL research, but we also are here to support ISOQOL’s current and prospective Patient Research Partners (PRP).

Leadership

Past Chair
Kirstie L. Haywood, DPHiL BSc (Hons)
University of Warwick
Warwick Medical School
Warwick Research in Nursing
United Kingdom
k.l.haywood@warwick.ac.uk

Chair
Hilary D. Wilson, PhD
Boehringer-Ingelheim
Maryland, United States
hilary.wilson@boehringer-ingelheim.com

Chair-Elect
Elizabeth J. Unni, PhD
Touro College of Pharmacy
New York, United States
Elizabeth.unni@touro.edu

Board Liaison
Kirstie L. Haywood, DPHiL BSc (Hons)
University of Warwick
Warwick Medical School
Warwick Research in Nursing
United Kingdom
k.l.haywood@warwick.ac.uk

Psychometrics SIG

This SIG explores the role of psychometrics in the development and evaluation of health related QOL measures. We seek to advance QOL research through the application of psychometric methods.

Psychometrics: Refers to a field of study and practice that deals with the theories and techniques of psychological measurement.

Leadership

Past Chair
R.J. Wirth, PhD
Vector Psychometric Group, LLC
North Carolina, United States
rjwirth@vpgcentral.com

Chair
Frances M. Yang, PhD
Kansas, United States
fyang3@kumc.edu

Chair-Elect
Henrik Eshøj, PhD
Odense University Hospital
Quality of Life Research Center
Department of Haematology
Denmark
henrik.eshoj@rsyd.dk

Board Liaison
Antoine Regnault, PhD
Modus Outcomes
France
antoine.regnault@modusoutcomes.com

QOL in Clinical Practice (CP) SIG

This SIG focuses on methodology and implementation initiatives to advance the effective use of PRO measures across different medical care settings. Our ultimate objective is to improve the management and treatment of individual patients, medical decision-making, and patient-centered care.

Leadership

Past Chair
Lotte Haverman, PhD
Emma Children’s Hospital
Academic Medical Centre
Netherlands
l.haverman@amc.nl

Chair
Kathryn E. Flynn, PhD
Medical College of Wisconsin
Center for International Blood and Marrow Transplant Research
Wisconsin, United States
kflynn@mcw.edu

Chair-Elect
Kate Absolom, PhD
University of Leeds
Section of Patient Centered Outcomes Research (PCOR)
United Kingdom
k.l.absolom@leeds.ac.uk

Board Liaison
Antoine Regnault, PhD
Modus Outcomes
France
antoine.regnault@modusoutcomes.com

Response Shift SIG

This SIG explores when and why response shift occurs. Our ultimate goal is to help QOL researchers and health care professionals recognize and account for response shift when using PROs.

Response Shift: A change in the meaning of one’s self-evaluation of a target construct, i.e., during a research trial, a patient’s definition of mild pain versus intolerable pain could change.

Leadership

Co-Chair
Lene Kongsgaard Nielsen, MD PhD Candidate
Odense University Hospital
Quality of Life Research Center
Denmark
lene.kongsgaard.nielsen@rsyd.dk

Co-Chair
Tolulope T. Sajobi, PhD
University of Calgary
Cumming School of Medicine
Department of Community Health Sciences
Alberta, Canada
ttsajobi@ucalgary.ca

Board Liaison
Antoine Regnault, PhD
Modus Outcomes
France
antoine.regnault@modusoutcomes.com

Translation and Cultural Adaptation (TCA) SIG

This SIG advances the research of clinical outcome assessment (COA) translation and cultural adaptation. We promote the visibility of cross-cultural issues related to the development and use of COAs by promoting collaborations between academia, industry, consultants and pharmaceutical companies.

Leadership

Co-Chair
Ana A. Popielnicki, BA
GlaxoSmithKline
Value Evidence and Outcomes (VEO)
Massachusetts, United States
ana.a.popielnicki@gsk.com

Co-Chair
Huda Shalhoub, PhD
Evidera
Patient-Centered Research Division
Massachusetts, United States
huda.shalhoub@evidera.com

Secretary/Treasurer
Dagmara Kuliś, MA
European Organisation for Research and Treatment of Cancer (EORTC)
Belgium
dagmara.kulis@eortc.org

Board Liaison
Josephine M. Norquist, MS
Merck Sharp & Dohme Corp.
Pennsylvania, United States
josephine_norquist@merck.com

Steering Committee
Donald L. Patrick, MSPH PhD
Katrin Conway, BA
Mona L. Martin, RN MPA
Sonya Eremenco, MA

Teamwork

ISOQOL uses Teamwork, an online project management software, to provide SIGs and Regional Networks with an online community for collaboration and information sharing.

Use Teamwork on your phone! Download the app!

Basic Functions

Community

Information Sharing

  • Talk to your fellow SIG members through Teamwork’s message function. Topics of message threads vary from methodology/application advice to grant/job opportunities.
  • Share files, make changes and retain access to previous versions of documents through Teamwork’s file share function.
  • Post links to useful resources through Teamwork’s link share function.

Collaboration

  • Working on a collaboration with fellow SIG members? Use Teamwork’s task function to assign work and set deadlines.
  • Keep track of a SIG’s accomplishments with the milestone function.

First Time?

To access Teamwork you must be a member of a SIG, Regional Network, Committee or Task Force. You can modify your SIG and Regional Network memberships at any time by signing into your ISOQOL online profile.

Once you have joined a SIG, ISOQOL staff will add you as a user and an invitation will be sent to your email inbox. You must follow the instructions in the invitation email to set up your Teamwork account. Staff checks for SIG membership changes about once a month, so if you want immediate access, follow up with an email to teamwork@isoqol.org.

Need Troubleshooting Help?

Visit Teamwork’s help page.

Please note that some of the articles on Teamwork’s help page provide instructions for “project administrators” (ISOQOL staff).  For example, adding and editing information for other users is something only ISOQOL staff can do.

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.