Program: On-Demand Sessions

Events » 28th Annual Conference » On-Demand Sessions

On-demand sessions will be recorded in advance and available for viewing anytime from 12 October through 30 November. Plenary sessions will be available on-demand following their live presentation date.


A symposium examines a topic from differing perspectives and presenters. Presentations and debate among speakers address alternative solutions, interpretations or points of view within the symposium topic area.

  • Structure: Didactic or panel presentation
  • Virtual Format: Group recording or individual presentation videos
  • Registration: Included with conference fees
  • View: On-demand


Symposium 1: Young People in the time of COVID


John Eric Chaplin, PhD, Sahlgrenska Academy at University of Gothenburg, Gothenburg, Sweden

Individual Presentations:

The impact of anxiety in relation to COVID-19 on the life-situation of young people in Sweden

Malin Berghammer, Ass. Professor, Queen Silvias Childrens Hospital, Gothenburg, Sweden
Margaretha Jenholt Nolbris, Ass. Professor, Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden

Quality of life and mental health in children and adolescents in Germany

Christiane Otto, PhD, University Medical Center Hamburg-Eppendorf, Hamburg, Germany

A longitudinal study on mental and social health of children and adolescents; a Dutch general population

Lotte Haverman, PhD, Emma Children’s Hospital, Amsterdam UMC, Amsterdam, Netherlands

Responding to Challenges Faced by Indigenous Children & Youth During COVID

Dr. Nancy Young, PhD, Laurentian University, Sudbury, Ontario, Canada

The Key to Creating a COVID Research Agenda in 2021 and Beyond: Safe, Intentional and Meaningful Engagement

Alisha Daya, The University of British Columbia, Burnaby, British Columbia, Canada
Skye Barbic, PhD, University of British Columbia, Vancouver, British Columbia, Canada

Symposium 2: Who cares? Moving beyond concordance studies in caregiver and proxy research


Jessica Roydhouse, PhD, University of Tasmania, Hobart, Australia

Individual Presentations:

Identifying appropriate measures for caregivers in a lung cancer longitudinal study

Bellinda King-Kallimanis, PhD, LUNGevity Foundation, Bethesda, United States

Among study participants with dementia, at what level of cognitive impairment should family caregiver proxy report be used instead of patient self-report for the assessment symptoms, function and quality of life?

Antonia Bennett, PhD, University of North Carolina, Chapel Hill, United States

Optimal Methods for Reducing Proxy-Introduced Bias on Patient-Reported Outcome Measurements for Group-Level Analyses

Brittany Lapin, PhD MPH, Cleveland Clinic, Cleveland, United States

A Matter of Perspective? Assessing the Role of Phrasing on Proxy-Reported Health Experiences

Jessica Roydhouse, PhD, University of Tasmania, Hobart, Australia

Symposium 3: PROMs in telehealth


Elizabeth Unni, PhD, Touro College of Pharmacy, New York, United States

Individual Presentations:

Current evidence supporting the implementation of electronic patient-reported outcome measures (ePROMs) in the management of chronic diseases – a structured review

Olalekan Lee Aiyegbusi, MBChB PhD, University of Birmingham, Birmingham, United Kingdom

Remote monitoring of symptoms from both disease and treatment in men with advanced prostate cancer – a single arm clinical trial

Natasha Roberts, PhD, University of Queensland, Herston, Australia

Electronic patient-reported outcome measure use during the management of patients with advanced chronic kidney disease: a pilot/feasibility trial

Derek Kyte, PhD, University of Worcester, Worcester, United Kingdom

Remote follow-up using patient-reported outcome measures in patients with chronic kidney disease: The PROKID study – an ongoing non-inferiority pragmatic randomised controlled trial

Birgith Grove, PhD student, AmbuFlex/Center for Patient-Reported Outcome, Herning, Denmark

Remote monitoring of Cystic Fibrosis (CF) due to COVID-19: use of telephone consultations combined with patient-reported outcome measures (PROMs) – a feasibility study

Liv Marit Valen Schougaard, AmbuFlex, Regional Hospital West Jutland, Herning, Denmark

Symposium 4: One size does not always fit all: Are we measuring what matters in patient experiences?


Maria J. Santana, PhD, Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada

Individual Presentations:

A Patients/Family Perspective

D’Arcy Duquette, Health Quality Council of Alberta, Calgary, Alberta, Canada

Measuring experiences of hospitalized patients in Alberta, Canada using validated surveys

Kyle Kemp, PhD, University of Calgary, Calgary, Alberta, Canada  

Categorizing patient concerns using natural language processing techniques

Paul Fairie, PhD, University of Calgary, Calgary, Alberta, Canada  

Innovative System for Patient-Reported Experience in Surgery (INSPiRES): semi-structured emotional reporting system for surgical patients and trainees.

Christopher Gibbons, The University of Texas MD Anderson Cancer Center, Houston, United States

Symposium 5: Advancing the science of patient-centered measurement methods


Danielle Lavallee, PharmD PhD, British Columbia Academic Health Sciences Network, Vancouver, British Columbia, Canada

Individual Presentations:

Priorities for advancing methods for measuring what matters: patient and researcher perspectives

Lena Cuthbertson, BHSc (OT) MEd OT(C) PMP, Office of Patient-Centred Measurement, British Columbia Ministry of Health, Vancouver, British Columbia, Canada

Considerations for the assessment and sharing of caregiver-reported outcomes: A qualitative interpretive description study

Fuchsia Howard, PhD RN, University of British Columbia, Vancouver, British Columbia, Canada 

Making Visible the Needs of Vulnerable and Marginalized Populations

Kelli Stajduhar, PhD, University of Victoria, Victoria, British Columbia, Canada

Centering Lived Expertise and Equity in Health Metrics

Saraswathi Vedam, RM PhD FACNM, Birth Place Lab, University of British Columbia, Vancouver, British Columbia, Canada

SIG Symposia

Educational symposia organized by ISOQOL Special Interest Groups (SIGs) are related to the special interest and expertise of the groups hosting the session. SIGs had the opportunity to submit a proposal and the presenting groups rotate annually to ensure parity and differentiation of content.

This year, the following SIGs and symposia were selected:

  • Structure: Didactic or panel presentation
  • Virtual Format: Group recording
  • Registration: Included with conference fees
  • View: On-demand


Industry SIG: Leveraging Social Media for Patient Centric Research in Medical Product Development


Michelle K. White, PhD, Optum Patient Insights, United States


Tom Willgoss, PhD MSc BA, Roche Products, United Kingdom
Louise Newton, MSc, Clinical Outcome Solutions, United Kingdom
Sarah Knight, MSc, Clarivate, United Kingdom
Selena Daniels, PharmD MS, FDA, United States


Paul Wicks, PhD, Wicks Digital Health, United Kingdom
Mindy Leffler, Casimir, United States

Social media sources allow for pragmatic, cost-effective approaches to incorporating patient perspectives in medical product development research. Risks related to the validity of the data may not outweigh the benefits of efficiency, lower cost, and access to unfiltered data. This symposium aims to expand knowledge of the benefits and challenges of social media approaches for patient-centric research. Panelists will review the use of social media for recruitment, data collection, and data analysis. Strategies for avoiding the pitfalls of problematic research design and analysis plans when incorporating social media sources will be examined, with a focus on practical application from lessons learned, including use of case studies. A speaker from the Division of Clinical Outcome Assessment (COA) of FDA will address the regulatory perspective on the use of social media sources for COA development and patient experience studies. Discussants, including a patient advocate, will craft point-counterpoint summations and questions for consideration.

QOL in Clinical Practice SIG: Putting the Horse before the Cart: Understanding the Needs and Individual Factors Influencing Clinicians’ Behaviour to Integrate PROMs in Daily Practice


Angela Wolff, PhD RN, Associate Professor, School of Nursing, Trinity Western University, Canada


Angela Wolff, PhD RN, Associate Professor, School of Nursing, Trinity Western University, Canada
Cecilia Pompili, PhD MD, Leeds Institute of Medical Research at St James’s, University of Leeds, Leeds Cancer Centre, St James’s University Hospital, United Kingdom
Angela M. Stover, PhD, Department of Health Policy and Management and Lineberger Comprehensive Cancer Center, UNC-Chapel Hill, United States
Lorynn Teela, MSc, Emma Children’s Hospital, Amsterdam UMC, University of Amsterdam, Child and Adolescent Psychiatry & Psychosocial Care, Amsterdam Reproduction and Development, Amsterdam Public Health, The Netherlands
Gita Mody, MPH MD, Assistant Professor, Director of Thoracic Surgical Oncology, UNC-Chapel Hill, United States

To facilitate the use of patient-reported outcome measures (PROMs) in clinical practice, past research guided by implementation science theory (IST) primarily focuses on the characteristics of the intervention, organization/care setting, and implementation process; however, a noteworthy gap is the specific needs of clinicians. Understanding these needs and individual factors that influence clinicians’ behavior is paramount for both initial and ongoing PROMs implementation. Our aims are to include the voices of clinicians, as end-users of PROMs data, to facilitate patient-centred care by:
1. Describing IST to inform clinicians use of PROMs in daily practice.
2. Sharing real-world examples examining clinicians’ needs in Canada, USA, Netherlands, and UK.
3. Learning about a User’s Guide that illustrates clinicians’ needs/individual factors.
By emphasizing the importance of engaging clinicians and attending to their needs, the outcome of this symposium is to facilitate behavioural change of clinicians and improve the daily use of PROMs in various practice settings.

Response Shift SIG: If it’s information, it’s not ‘bias’: Recent developments in response-shift nomenclature and methods


Carolyn E. Schwartz, ScD, DeltaQuest Foundation and Tufts University School of Medicine, United States
Richard L. Skolasky, Jr., ScD, Johns Hopkins University, United States


Richard L. Skolasky, Jr., ScD, Johns Hopkins University, United States
Gudrun Elin Rohde, RN PhD, University of Agder and Sorlandet Hospital, Norway
Carolyn E. Schwartz, ScD, DeltaQuest Foundation and Tufts University School of Medicine, United States
I-Chan Huang, PhD, St. Jude Children’s Research Hospital, United States


Joseph Lipscomb, PhD, Rollins School of Public Health, Emory University, United States

For over two decades, quality-of-life (QOL) researchers have studied response-shift effects in patient-reported outcomes. Building on the Sprangers and Schwartz (1999) and Rapkin and Schwartz (2004) theoretical models, researchers have noted paradoxical findings and have regularly attributed them to response shift. The growth in response-shift methods has enabled a stronger empirical foundation for response-shift research, but many of these methods utilize language in framing the research question(s) and interpreting results that treat response-shift effects as ‘bias’, ‘noise’, ‘error’, or otherwise something that should be removed from the results rather than information that matters. Since language influences thought (Sapir-Whorf hypothesis), it is important to become aware of how these ‘habits’ for talking about response-shift effects can be detrimental to the field. This symposium will characterize temporal patterns in how response-shift effects have been described in the literature, will propose nomenclature for framing research questions and results, and will describe a new method for detecting response-shift effects that is feasible across sample sizes.

Oral Presentations

Individual abstracts, peer-reviewed and selected for oral presentation. Traditionally oral sessions are composed of 5-6 peer-reviewed abstracts clustered around one common theme.

  • Virtual Format: Individual 12 minute recordings
  • Registration: Included with conference fees
  • View: On-demand


Oral Brief Presentations

Individual abstracts, peer-reviewed and selected for oral brief presentation. Traditionally Oral Brief sessions are composed of 10 abstracts in the same primary application category.

  • Virtual Format: Individual 7 minute recordings
  • Registration: Included with conference fees
  • View: On-demand


Poster Presentations

Individual abstracts, peer-reviewed and selected for poster presentation. Using the provided cloud-based software, all presenters create a virtual poster that includes text, images, links and audio clips to explain their research.

  • Virtual Format: Digital iPoster
  • Registration: Included with conference fees
  • View: On-demand


Awards and Member Business Meeting 

The Awards and Member Business Meeting includes presentation of annual awards, leadership transition, and official ISOQOL business. Since membership dues are included in the conference registration, all Annual Conference attendees are members and are encouraged to view this session.

  • Virtual Format: One recorded presentation
  • Registration: Included with conference fees
  • View: On-demand


Tricks of the Trade Presentation

Presented by the New Investigators SIG and intended for new investigators in the QOL field, however all are welcome and encouraged to view the session.

  • Virtual Format: One recorded presentation
  • Registration: Included with conference fees
  • View: On-demand

Rob Arbuckle, Chris Sidey-Gibbons, PhD, and Bellinda King-Kallimanis, PhD

Forging career paths: lessons from senior ISOQOL members

Thinking of new career options and seeking advice for a particular industry? Forging new career paths can often be a daunting experience, especially for early-career researchers as it is often difficult to navigate the job search and application process for different industries. Come join us at this year’s Tricks of the Trade session as we help you demystify these processes. If you want to learn more about preparing your CV, interview processes and job expectations in different industries, this is the session for you. This session will allow attendees to hear from experts in different fields and learn about the important skills necessary for careers in different industries. Learn from our three panelists as they share personal early career stories and tips on how to prepare for different careers in academia, industry, and regulatory agencies.

Our Sponsors

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.