Special Interest Groups

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Special Interest Groups

Connect with professionals who have a similar career focus.

Australia and New Zealand (ANZ) SIG
#ISOQOL_ANZ

This SIG 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
Nadia Corsini
University of South Australia
South Australia, Australia
nadia.corsini@unisa.edu.au

Chair
Melanie Hawkins, PhD
Swinburne University of Technology
Victoria, Australia
melaniehawkins@swin.edu.au

Chair-Elect
Jessica Roydhouse, PhD
University of Tasmania
Tasmania, Australia
jessica.roydhouse@utas.edu.au 

Secretary/Treasurer
Imogen Ramsey, PhD
University of South Australia
South Australia, Australia
imogen.ramsey@flinders.edu.au

Board Liaison
Tolulope T. Sajobi, PhD
University of Calgary
Department of Community Health Sciences
Alberta, Canada
ttsajobi@ucalgary.ca

Canada-PRO SIG
#ISOQOL_CanadaPRO

This SIG 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

Chair
Doris Howell, RN PhD
Princess Margaret Cancer Research Institute
Ontario, Canada
doris.howell@uhn.ca

Board Liaison
Adesola Odole, PhD
University of Ibadan
Nigeria
adesola_odole@yahoo.com

Child Health SIG
#ISOQOL_ChildHealth

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
Zephanie F. Tyack, BOccThy(Hons) PhD
Queensland University of Technology
Queensland, Australia
z.tyack@uq.edu.au

Chair
Sumedh Bele, MBBS MPH
Alberta, Canada
sumedh.bele@ucalgary.ca

Chair-Elect
Harpreet Chhina, PhD
University of British Columbia
British Columbia, Canada
chhina.harpreet@gmail.com

Board Liaison
Roxanne E. Jensen, PhD
National Cancer Institute
Maryland, United States
roxanne.jensen@nih.gov

Chinese PRO SIG
#ISOQOL_ChinesePRO

This SIG 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
Qiuling Shi, PhD
Chongqing Medical University
China
qshi@cqmu.edu.cn

Co-Chair
Wenjie Duan, PhD
East China University of Science and Technology
China
duan.w@outlook.com

Board Liaison
Tolulope T. Sajobi, PhD
University of Calgary
Department of Community Health Sciences
Alberta, Canada
ttsajobi@ucalgary.ca

Clinical Practice (CP) SIG
#ISOQOL_CP

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
Elizabeth J. Austin, MPH
University of Washington
Washington, United States
austie@uw.edu

Chair
Angela Wolff, PhD RN
Trinity Western University
British Colombia, Canada
angela.wolff@twu.ca

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

Board Liaison
Tom Willgoss, PhD MSc
Roche
United Kingdom
tom.willgoss@roche.com

Developing Nation SIG
#ISOQOL_DevelopingNation

This SIG 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
Liliane LinsKusterer, PhD
Federal University of Bahia
School of Medicine
Brazil
lkusterer@gmail.com

Co-Chair
TBD

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

Digital Health and eCOA SIG
#ISOQOL_DigitalHealth

The  Digital Health and eCOA SIG will broadly cover topics of interest related to the scientific rigor, development, validation, and implementation of PRO, ClinRO, PerfO, ObsRO, and Proxy measures in electronic modes of data collection as well as digital measures. The SIG promotes the visibility of digital measures and eCOA related to the development and use of COAs by facilitating collaborations between academia, industry, consultants, COA developers, and pharmaceutical sponsors.

Leadership

Co-Chair
Alisa Heinzman, MFA
RWS Life Sciences
Washington, United States
Alisa.Heinzman@rws.com

Co-Chair
Megan Turner
GlaxoSmithKline
Pennsylvania, United States
megan.c.turner@gsk.com

Secretary
Ana Popielnicki
GlaxoSmithKline
Pennsylvania, United States
ana.a.popielnicki@gsk.com 

German-speaking Countries SIG
#ISOQOL_GermanSpeaking

This SIG 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

Past Chair
Kathrin I. Fischer, MSc PhD
Boehringer Ingelheim
Germany
kathrin_2.fischer@boehringer-ingelheim.com

Chair
Monika Sztankay, PhD
University Clinic of Psychiatry II
Austria
monika.sztankay@tirol-kliniken.at

Chair-Elect
Klara Greffin, Dipl -Psych.
University of Greifswald
Germany
Klara.Greffin@uni-greifswald.de

Board Liason
Adesola Odole, PhD
University of Ibadan
Nigeria
adesola_odole@yahoo.com

Health Preference Research SIG
#ISOQOL_HPR

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
Donna Rowen, PhD
University of Sheffield
United Kingdom
d.rowen@sheffield.ac.uk

Chair
Julie A. Campbell, BEc (Hons) PhD
University of Tasmania
Tasmania, Australia
Julie.Campbell@utas.edu.au

Chair-Elect
Ana Maria Rodriguez-Leboeuf, PhD MSc PT
McGill University, IQVIA
Spain
anamaria.rodriguez@iqvia.com

Board Liaison
Kathryn E. Flynn, PhD
Medical College of Wisconsin
Wisconsin, United States
kflynn@mcw.edu

Ibero America SIG
#ISOQOL_Ibero

This SIG 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
Pedro L. Ferreira, PhD
CEISUC – University of Coimbra
Centre for Health Studies & Research
Portugal
pedrof@fe.uc.pt

Co-Chair
TBD

Board Liaison
Adesola Odole, PhD
University of Ibadan
Nigeria
adesola_odole@yahoo.com

Industry SIG (I-SIG)
#ISOQOL_Industry

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
Calvin N. Ho, PhD
AstraZeneca
Maryland, United States
calvin.ho@astrazeneca.com

Co-Chair
Milena D. Anatchkova, PhD
Evidera
Maryland, United States
Milena.anatchkova@evidera.com

Board Liaison
Tom Willgoss, PhD MSc 
Roche
United Kingdom
tom.willgoss@roche.com

Japan
#ISOQOL_Japan

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

Co-Chair
Takuhiro Yamaguchi, PhD
Tohoku University Graduate School of Medicine
Japan
takuhiro.yamaguchi@gmail.com

Secretary
Rika Hayashida, MS
University of Nagasaki, Siebold
Japan
rika-h@sun.ac.jp

Board Liaison
Tolulope T. Sajobi, PhD
University of Calgary
Department of Community Health Sciences
Alberta, Canada
ttsajobi@ucalgary.ca

Mixed Methods SIG
#ISOQOL_MixedMethods

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

Past Chair
Rachel N. Cusatis, PhD
Medical College of Wisconsin
Wisconsin, United States
rcusatis@mcw.edu

Chair
Bridget Gaglio, PhD MPH
Evidera
Maryland, United States
bridget.gaglio@evidera.com

Chair-Elect
Amanda Barbeau, MPH
PCORI
Minnesota, United States
abarbeau@pcori.org

Board Liaison
Kathryn E. Flynn, PhD
Medical College of Wisconsin
Wisconsin, United States
kflynn@mcw.edu

New Investigators SIG
#ISOQOL_NewInvestigators

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
Lotte van der Weijst
European Organisation For Research And Treatment Of Cancer
Belgium
lotte.vanderweijst@eortc.org​

Co-Chair
Jae-Yung Kwon, PhD RN
University of Victoria
British Columbia, Canada
jykn1@uvic.ca

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

Patient Engagement (PE) SIG
#ISOQOL_PE

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

Co-Chair
Sadia Ahmed, BHSc MSc
University of Calgary
Alberta, Canada
sadahmed@ucalgary.ca

Co-Chair
Christel McMullan, PhD
University of Birmingham
United Kingdom
c.mcmullan@bham.ac.uk

Patient Research Partner Co-Chair
Leonie Young
Wesley Hospital Choices Cancer Support Centre
Queensland, Australia
leonie.young@uchealth.com.au

Board Liaison
Roxanne E. Jensen, PhD
National Cancer Institute
Maryland, United States
roxanne.jensen@nih.gov

Psychometrics SIG
#ISOQOL_Psychometrics

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
Donald “Don” Bushnell, MA
Evidera | PPD
Arizona, United States
don.bushnell@evidera.com

Chair
Jinxiang “Fran” Hu
Kansas, United States
jhu2@kumc.edu

Chair-Elect
Jeffrey J. Swigris, DO MS
National Jewish Health
Coloardo, United States
swigrisj@njhealth.org

Board Liaison
Christopher Sidey-Gibbons, PhD
The University of Texas MD Anderson Cancer Center
Texas, United States
cgibbons@mdanderson.org

Regulatory and Health Technology Assessment Engagement (R&HE) SIG
#ISOQOL_RHE

This SIG will routinely and actively engage with regulatory agencies and health technology assessment (HTA) bodies to address critical applied measurement issues raised by these entities or that emerge from their public communications (e.g., guidance documents, reflection papers, workshops). This collaboration embraces a broad measurement perspective and enables us to build scientifically-based patient-focused recommendations regarding the use of clinical outcome assessments (COAs) in the evaluation of therapeutic interventions aimed at advancing human health and well-being.

Leadership

Past Chair
Ashley F. Slagle, MS PhD
Aspen Consulting, LLC
Colorado, United States
ashley@aspenconsulting.services

Chair
Robyn Carson
AbbVie
New Jersey, United States
robyn.carson@abbvie.com

Chair-Elect
Wen-Hung Chen
GSK
Maryland, United States
wen-hung.x.chen@gsk.com

Board Liaison
Roxanne E. Jensen, PhD
National Cancer Institute
Maryland, United States
roxanne.jensen@nih.gov

Response Shift SIG
#ISOQOL_ResponseShift

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

Co-Chair
Justin Baker, MD FAAP FAAHPM
St. Jude Children’s Research Hospital
Tennessee, United States
justin.baker@stjude.org

Board Liaison
Christopher Sidey-Gibbons, PhD
The University of Texas MD Anderson Cancer Center
Texas, United States
cgibbons@mdanderson.org

Statistics SIG
#ISOQOL_Statistics

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

Past Chair
Antoine Regnault, PhD
Modus Outcomes, A Division of THREAD
France
antoine.regnault@threadresearch.com

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

Chair Elect
Libby L. Floden, PhD MPH
Clinical Outcomes Solutions
Arizona, United States
libby.floden@evinova.com

Board Liaison
Christopher Sidey-Gibbons, PhD
The University of Texas MD Anderson Cancer Center
Texas, United States
cgibbons@mdanderson.org

Translation and Cultural Adaptation (TCA) SIG
#ISOQOL_TCA

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
Caroline Anfray
Mapi Research Trust
France
caroline.anfray@mapi-trust.org

Co-Chair
Barbara Brandt, MA
Critical Path Institute
Connecticut, United States
bbrandt@c-path.org

Secretary
Anita Bradley-Gilbride, PhD
Health Psychology Research Ltd
United Kingdom
anitabg@healthpsychologyresearch.com

Board Liaison
Tom Willgoss, PhD MSc
Roche
United Kingdom
tom.willgoss@roche.com

 

United Kingdom and Ireland (UK and Ireland)
#ISOQOL_UK

This SIG 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
Timothy “Tim” Pickles, BSc (Hons) MSc
Cardiff University
United Kingdom
PicklesTE@Cardiff.ac.uk

Chair
Antoinette F. Davey, PhD
University of Exeter
United Kingdom
antoinette.davey@exeter.ac.uk

Chair-Elect
Matt Hall, BSc MSc
Swansea University & Velindre Cancer Centre
United Kingdom
m.c.hall@swansea.ac.uk

Board Liaison
Adesola Odole, PhD
University of Ibadan
Nigeria
adesola_odole@yahoo.com

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.