Special Interest Groups

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

Chair
Ashika D. Maharaj, PhD Candidate
Monash University
Victoria, Australia
ashika.maharaj@monash.edu

Chair-Elect
Liane J. Ioannou, PhD
Monash University
Victoria, Australia
liane.ioannou@monash.edu

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

Board Liaison
Lotte Haverman, PhD
Emma Children’s Hospital
Amsterdam University Medical Centers
Netherlands
l.haverman@amsterdamumc.nl 

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
Nora Fayed, PhD MSc OT
Queen’s University
Ontario, Canada
nora.fayed@queensu.ca

Chair
Ana M. Moga, PT PhD Candidate
McGill University
School of Physical & Occupational Therapy
Quebec, Canada
ana.moga@mcgill.ca

Chair-Elect
Fatima Al Sayah, PhD
University of Alberta
Alberta, Canada
falsayah@ualberta.ca

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

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
Lotte Haverman, PhD
Emma Children’s Hospital
Amsterdam University Medical Centers
Netherlands
l.haverman@amsterdamumc.nl

Developing Nation

This Regional Network identifies the social and economic issues and concerns that impact health and health related quality of life in developing countries to inform future research, practice, and policy recommendations. It also serves as a link between the members of this SIG and other SIGs to bring these social and economic issues and concerns to audiences where they may not otherwise be represented. We invite you to join us in addressing the challenges of measuring the quality of life in developing countries, considering language, and cultural barriers, the ethics of research in situations of poverty, and reduced autonomy. 

Leadership

Co-Chair
Adesola C. Odole, PhD
University of Ibadan
College of Medicine
Nigeria
adesola_odole@yahoo.com

Co-Chair
Liliane Lins-Kusterer, PhD
Federal University of Bahia
University Hospital
Brazil
lkusterer@gmail.com

Co-Chair
Vijaya K Gothwal, PhD
Brien Holden Eye Research Centre
Patient-Reported Outcomes Unit
India
vijayagothwal@gmail.com

Board Liaison
Nalin Payakachat, BPharm MS PhD
University of Arkansas for Medical Sciences
College of Pharmacy
Arkansas, United States
npayakachat@uams.edu

German-Speaking Countries

This Regional Network promotes communication, interaction and collaboration between ISOQOL members from German-speaking countries.  We create a platform that enables the exchange of information, promotes research and education of PROs and facilitates networking and collaboration between researchers of all career stages, including clinicians, patients, colleagues from industry, government, regulatory agencies, not-for-profit institutions and all interested in advancing the science of quality of life (QOL) and related patient-centered outcomes (PCO) in German-speaking countries.

Leadership

Co-Chair
Kathrin Fischer, MSc
Charite Universitatsmedizin
Germany
kathrin.fischer@charite.de

Co-Chair
Bernhard Holzner, PhD ME
Medical University of Innsbruck
Austria
bernhard.holzner@tirol-kliniken.at

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

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
Noélle O. Freitas, RN PhD
Guarulhos University
Brazil
nooliveirafreitas@gmail.com  

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

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

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
Department of Health Informatics
Kyoto University
Japan
miy@plum.ocn.ne.jp

Secretary
Yoshimi Suzukamo, PhD
Department of Physical Medicine & Rehabilitation
Tohoku University
Japan
suzukamo@med.tohoku.ac.jp 

Board Liaison
Lotte Haverman, PhD
Emma Children’s Hospital
Amsterdam University Medical Centers
Netherlands
l.haverman@amsterdamumc.nl

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
Patricia (Trish) Holch, BSc PhD
Leeds Beckett University
United Kingdom
t.holch@leedsbeckett.ac.uk

Chair
Grace M. Turner, BSc MSc PhD
University of Birmingham
Murray Learning Centre
United Kingdom
g.turner.1@bham.ac.uk

Chair-Elect
Jonathon (Jon) Evans, BSc MSc MD FRCS
University of Exeter
Health Service and Policy Research Group
United Kingdom
j.p.evans2@exeter.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
Robert Arbuckle
Adelphi Values
United Kingdom
Rob.Arbuckle@adelphivalues.com

Chair
John E. Chaplin, PhD AFBPsS C.Psychol
Sahlgrenska Academy at the University of Gothenburg
Pediatric Growth Research Center
Sweden
john.chaplin@gu.se

Chair-Elect
Holger Muehlan, PhD
University of Greifswald
Department Health & Prevention
Germany
holger.muehlan@uni-greifswald.de

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

Past Chair
Manraj N. Kaur, PT PhD
Harvard Medical School
Ontario, Canada
kaurmn@mcmaster.ca

Chair
Amy M. Cizik, PhD MPH
University of Utah
Utah, United States
amy.cizik@hsc.utah.edu

Chair-Elect
Heather Gelhorn, PhD
Evidera
Maryland, United States
heather.gelhorn@evidera.com

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
Michelle K. White, PhD
Optum Patient Insights
Rhode Island, United States
mwhite@qualitymetric.com

Co-Chair
Patricia (Trisha) Corey-Lisle, PhD
Genentech
Connecticut, United States
lisle3@sbcglobal.net

Board Liaison
Jakob Bjorner, MD PhD
QualityMetric
Denmark
jbjorner@qualitymetric.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
Motolani E. Ogunsanya, BPharm MS PhD
University of Oklahoma Health Sciences Center
College of Pharmacy
Oklahoma, United States
motolani-ogunsanya@ouhsc.edu

Co-Chair
Antoinette F. Davey, MPhil
University of Exeter
United Kingdom
ad632@exeter.ac.uk

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
Nikki Ow, BOT MA
McGill University
Quebec, Canada
xiao.ow@mail.mcgill.ca

Co-Chair
Maryam Mozafarinia, MSc
McGill University
Quebec, Canada
maryam.mozafarinia@mail.mcgill.ca

Board Liaison
Nalin Payakachat, BPharm MS PhD
University of Arkansas for Medical Sciences
College of Pharmacy
Arkansas, United States
npayakachat@uams.edu

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

Chair
Danielle Lavallee, PharmD PhD
BC Academic Health Sciences Network
British Colombia, Canada
dlavallee@bcashn.ca

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

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
Henrik Eshøj, PhD
Odense University Hospital
Quality of Life Research Center
Denmark
henrik.eshoj@rsyd.dk

Chair
Philip (Pip) Griffiths, PhD
IQVIA
United Kingdom
pip.griffiths@iqvia.com

Chair-Elect
John Devin Peipert, PhD
Northwestern University
Illinois, United States
john.peipert@northwestern.edu

Board Liaison
Jakob Bjorner, MD PhD
QualityMetric
Denmark
jbjorner@qualitymetric.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
Kate Absolom, PhD
University of Leeds
United Kingdom
k.l.absolom@leeds.ac.uk

Chair
Angela M. Stover, PhD
University of North Carolina
North Carolina, United States
stoveram@email.unc.edu

Chair-Elect
Liv Marit Valen Schougaard
AmbuFlex, Regional Hospital West Jutland
Denmark
livschou@rm.dk

Board Liaison
Richard Skolasky, ScD
Johns Hopkins University
Maryland, United States
rskolas1@jhmi.edu

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
Carolyn E. Schwartz, ScD
DeltaQuest Foundation, Inc.
Massachusetts, United States
carolyn.schwartz@deltaquest.org

Co-Chair and Board Liaison
Richard Skolasky, ScD
Johns Hopkins University
Maryland, United States
rskolas1@jhmi.edu

Statistics SIG

This SIG connects statisticians working in the field of quality of life and provides a platform for communication, interaction and collaboration. Our aim is to identify and progress key areas for research and provide workshops and training for the wider ISOQOL membership.

Leadership

Co-Chair
Kim Cocks, PhD
Adelphi Values
United Kingdom
Kim.Cocks@adelphivalues.com

Co-Chair
Antoine Regnault, PhD
Modus Outcomes
France
antoine.regnault@modusoutcomes.com

Board Liaison
Jakob Bjorner, MD PhD
QualityMetric
Denmark
jbjorner@qualitymetric.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
Shawn McKown, MA
RWS Life Sciences
Connecticut, United States
shawnmckown@rws.com

Co-Chair
Dagmara Kuliś, MA
EORTC
Belgium
dagmara.kulis@eortc.org

Secretary
Dana G. Weiss, MA
Illinois, United States
danaweiss311@gmail.com

Board Liaison
Richard Skolasky, ScD
Johns Hopkins University
Maryland, United States
rskolas1@jhmi.edu

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.

Start a New SIG or RGN

Any five Society members in good standing may organize a Special Interest Group (SIG) or Regional Network (RGN) of the Society by requesting authorization in a signed petition addressed to the Board of Directors.

The petition shall include the proposed name, the specific area of interest, the scope and purpose of the proposed SIG, and CVs for the founding members. The petition shall be sent to the Executive Director for review.

The Executive Director shall forward the petition to the Board of Directors for review. If approved, the SIG’s charter will be adopted by the Society and the SIG will be listed as a membership option for members. The ISOQOL Executive Office may assist in organizing the SIG.

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.