Program

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Plenary Sessions

Plenary 1: Assessment: The art and science of selecting measures for patient-centered outcomes research.

Monday, 21 October | 8:30 am – 10:00 am

Sponsored by EORTC

Description:

The goal for this plenary is to stimulate discussion regarding the choice of different types of outcome measures (PROMs, clinical outcome assessments, surrogate outcomes) in patient-centered outcomes research and the implications of those choices for policy and patient care.

Speakers:

Robert Kaplan, PhD, Stanford University, Stanford, California, United States

Care Research and Quality (AHRQ) and Associate Director for Behavioral and Social Sciences at the National Institutes of Health. He is Distinguished Research Professor at UCLA, and Adjunct Professor of Medicine at Stanford. Kaplan is a past President of five professional organizations including ISOQOL. He is a former Editor-in-Chief of Health Psychology and of the Annals of Behavioral Medicine and is a member of the National Academy of Medicine. His 20 books and over 550 articles or chapters have been cited over 50,000 times (H-index>100).

 

Paul Kluetz, MD, U.S. Food and Drug Administration, Oncology Center of Excellence, Silver Spring, Maryland, United States

Paul Kluetz is a medical oncologist and Deputy Director of the Oncology Center of Excellence (OCE) at the U.S. FDA. His interests include trial design and endpoint selection to expedite drug development and define clinical benefit in oncology trials. In addition to supporting the broader OCE mission, Dr. Kluetz created and directs the OCE’s patient-focused drug development program, which has been instrumental in leading FDA efforts to collect, review, analyze and communicate clinical outcome assessment (COA) information such as patient-reported outcomes. Dr. Kluetz remains clinically active, caring for patients and supervising medical residents at the Georgetown University Hospital.

Plenary 2: Cutting Edge Research Plenary

Monday, 21 October | 10:50 am – 12:00 pm

Sponsored By Vector Psychometric Group, LLC

Description:

The Cutting Edge Research plenary session features some of the highest-ranked, innovative research from ISOQOL abstract submissions. In particular, these abstracts reflect research that truly “pushes the ISOQOL envelope” in providing new and different ways to look at quality of life.

Speakers:

Lotte Haverman, PhD, Emma Children’s Hospital – Academic Medical Centre Amsterdam, Netherlands

From statistician to clinician: The feedback of PROMIS® CATs within KLIK

Dr. Lotte Haverman is the head of the psychosocial research group and a clinical pediatric psychologist of the psychosocial department at the Emma Children’s Hospital/Amsterdam University Medical Centers. Her research group focuses on the effectiveness of the use of Patient Reported Outcome Measures (PROMs), including feedback to health care providers, in daily practice including various patient populations (e.g. hemophilia, JIA, HIV, HPN, Nephrology), the development of new PROMS (e.g. Distress Thermometer for Parents), collecting norm data and translating and validating PROMIS item banks into Dutch and psychosocial outcomes of parents, patients and children with chronic illnesses.

 

Angela Stover, PhD, University of North Carolina at Chapel Hill, Chapel Hill, NC, United States

Demographic and symptom differences in PRO-TECT trial (AFT-39) cancer patients electing to complete weekly home patient-reported outcome measures (PROMs) via an automated phone call vs. email: Implications for implementing PROs into routine care

Dr. Angela Stover is an assistant professor of health policy and management at the University of North Carolina at Chapel Hill and an associate member of Lineberger Comprehensive Cancer Center. Dr. Stover’s research focuses on developing and implementing PROMs in routine care and she has dedicated training in implementation science. She serves as an investigator on PROM studies funded by PCORI, NIH, and CMS in the United States.

 

Chris Sidey-Gibbons, PhD, Brigham and Women’s Hospital and Harvard Medical School, Boston, MA, United States

Predicting patient-reported outcomes following mastectomy and breast reconstruction: application of machine learning techniques to real patient data.

Dr. Sidey-Gibbons is a psychometrician, data scientist, and health services researcher whose principal interests lie in the development and evaluation of computational techniques to enhance the collection, analysis, and reporting of PROMs data in clinical care. Working on both sides of the Atlantic, Dr. Sidey-Gibbons has been Director of Health Assessment and Innovation at the University of Cambridge Psychometrics Center and Co-Director of the Patient-Reported Outcomes, Value, and Experience (PROVE) Center at Brigham and Women’s Hospital and Harvard Medical School. He continues to serve as Health Director of the Concerto Platform, an open-source project designed to endow researchers and clinicians with tools to develop and distribute advanced psychometric assessment which encompasses computerized adaptive testing, tailored feedback, and machine learning. Using Concerto, Dr. Sidey-Gibbons has developed a computerized adaptive testing version of the World Health Organization Quality of Life assessment which has been completed by over 15,000 participants in over 100 countries around the globe.

 

Todd DeWees, PhD, Mayo Clinic, Scottsdale, AZ, United States

Artificial Neural Network Analysis of Patient-Reported Symptomatic Adverse Events utilizing PRO-CTCAE during Proton and Photon Radiation Therapy: Results of a Prospective Registry in a Large-Volume, Multi-Site Practice

Dr. DeWees is an Associate Professor of Biostatistics at Mayo Clinic in Arizona and serves as the lead biostatistician for Radiation Oncology across the Mayo Clinic enterprise.  He is involved in all aspects of radiation oncology; working with departmental researchers from fields including: biologists, physicists, clinicians, residents, and students.  He is responsible for design, monitoring, analysis, interpretation, and reporting for genetic, biological, animal, human, and machine trials.  He aids in the design, implementation and publication of grants, prospective, and retrospective trials.  Dr. DeWees’ research focuses on the optimization and utilization of statistical methodology for clinical data and patient reported outcomes.

Plenary 3: Action: Theory, methods, and application related to achieving optimal patient-centered outcomes – lessons from Implementation Science.

Tuesday, 22 October | 8:40 am – 10:10 am

Sponsored by Genentech

Description:

ISOQOL conference attendees have made remarkable contributions to the field of patient-reported outcome (PRO) measurement. Increasingly more attention is being placed on implementing PROs in routine clinical practice. This plenary will provide a platform to discuss how patient-centered outcomes research and patient-centered care can be strengthened through Implementation Science.

Speakers:

Carl May, PhD, London School of Hygiene and Tropical Medicine, London, United Kingdom

Professor Carl May is a medical sociologist and health systems scientist with a wide range of research interests across the sociology of health technologies and of human relations in the healthcare systems of the advanced economies. This work has ranged from very applied evaluation studies in health services research (especially in qualitative studies nested within randomized controlled trials) through studies of the social construction of professional-patient relations and different disease entities, to fundamental social science research on the dynamics of human agency under conditions of constraint in implementation science.

 

Karen Emmons, PhD, Harvard T.H. Chan School of Public Health, Boston, MA, United States

Karen Emmons, Ph.D., is a Professor of Social and Behavioral Science at the Harvard-Chan School of Public Health. Her work focuses on community-based approaches to cancer prevention for disadvantaged populations. These efforts target a range of cancer risk factors, including nutrition, physical activity, sun exposure, tobacco and second-hand smoke exposure, and cancer screening. With a passion for community-based implementation science, Dr. Emmons has been actively involved in national efforts to develop implementation research and training programs. As the Faculty Director of the Community Engagement Program for Harvard’s Clinical Translational Science Award, she brings this focus to advance evidence-based strategies to improve community health.

 

Amy M. Kilbourne, PhD, MPH, University of Michigan, Ann Arbor, MI, United States

Amy Kilbourne, PhD, MPH is the Director of the Quality Enhancement Research Initiative (QUERI) for the Veterans Affairs and Professor of Psychiatry at the University of Michigan. Dr. Kilbourne is a national expert in implementation science, partnered-oriented research, and translation of clinical quality improvement intervention findings into actionable policy and practice. She has been widely recognized for her research in multisite implementation intervention trials, development and application of large outcomes databases to improve person-centered care, and integrated physical and mental health care strategies.

Plenary 4: Accountability: Counting What Counts

Wednesday, 23 October | 1:50 pm – 3:20 pm

Sponsored by Pfizer

Description:

The goal of this plenary is to consider how we can expand the use of PROMs and promote them as endpoints for assessing healthcare quality, clinical decision making, and delivery of patient-centered care.

Speakers:

Mona Khalid, BSc (Hons) MSc PhD, International Consortium for Health Outcomes Measurement, London, United Kingdom

Mona Khalid joined ICHOM as the VP of Outcomes Research and Development. Prior to joining ICHOM, Mona spent 10 years in the life sciences industry, leading teams to demonstrate the value of medical interventions. She has joined from Takeda Pharmaceuticals, where she was Global Head of Evidence and Value Generation. Before her tenure in the life sciences industry, she held academic roles at the Institute of Child Health, UCL and at the University of Toronto. She holds a BSc. (Hons) in biology, a MSc. in biomedical science and initiated her PhD in epidemiology.

 

Rachel Hess, MD, MS, University of Utah, Salt Lake City, UT, United States

Rachel Hess, MD, MS is a Professor of Population Health Sciences and Internal Medicine, Chief of the Division of Health System Innovation and Research (HSIR) and co-Director of the Utah Center for Clinical and Translational Science at the University of Utah. As a General Internist and Health Services Researcher, Dr. Hess brings a unique perspective of translating research into clinical and policy practice. Dr. Hess’s research aims to improve patient-centered outcomes in clinical care. In service of this mission, she seeks to understand determinants of quality of life and how health-related quality of life affects health and cost outcomes.

 

Dominick L. Frosch, PhD, Palo Alto Medical Foundation Research Institute, Palo Alto, CA, United States

Dominick L. Frosch, Ph.D. is Director and Senior Scientist at the Palo Alto Medical Foundation Research Institute. Dr. Frosch’s research has focused on advancing patient engagement and patient-centered care for over 20 years. He has published over 120 articles, editorials and chapters in the scholarly literature (h-index=44) and serves as Deputy Editor for the Journal of General Internal Medicine. Dr. Frosch received his Ph.D. in clinical psychology with an emphasis on behavioral medicine from the University of California San Diego and completed a fellowship as Robert Wood Johnson Foundation Health & Society Scholar at the University of Pennsylvania.

Roundtables

Tuesday, 22 October | 7:30 am – 8:30 am

Roundtables are informal meetings, with up to nine participants, to network and discuss a select topic related to your work and field. A ticket is required for each roundtable which can be purchased during the registration process.

Coffee will be provided.

Registration Rates

$35 advanced
$45 onsite (if available)

Roundtable 01: How to peer review a paper

Description:

This Roundtable will discuss how to respectfully, diligently and constructively review papers to provide reviews that are useful to editors, authors, and potential readers. Reviewers frequently learn a lot completing review! Various strategies for preparing scientifically sound and constructive reviews will be summarized and discussed.

Speakers:

 

David Feeny, PhD
Journal of Patient-Reported Outcomes
Co-Editor-in-Chief

 

 

 

Dennis Revicki, PhD
Journal of Patient-Reported Outcomes
Co-Editor-in-Chief

Roundtable 03: Health utility measures for QALY construction

Description:

This roundtable will discuss the construction and use of preference-based summary scores for applications like cost-utility and cost-effectiveness analyses.

 

Speakers:

Janel Hanmer, MD, PhD
University of Pittsburgh
Department of Medicine
Pittsburgh, PA, United States

Roundtable 04: Developing Clinical Outcome Assessments for Regulatory Purposes

Description:

In this roundtable, we will discuss the process of developing patient-reported outcomes (PROs) and other clinical outcome assessments for regulatory submissions, and will cover broad principles such as validation, submission, and qualification, as well as recent examples. This is an interactive discussion, so please bring your questions!

 

Speakers:

William Lenderking, PhD
Evidera
Bethesda, MD, United States

Roundtable 05: Integrating patients as partners in clinical research: Perspectives from PCORI

Description:

PCORI has sought to alter how clinical research is conventionally designed and conducted, meaningfully integrating patients at the earliest stages of studies through to the dissemination of results. In this roundtable, a senior PCORI scientist will discuss various engagement and research strategies to partner with patients, drawing on specific studies and lessons learned from PCORI’s portfolio.

 

Speakers:

Jason Gerson, PhD
PCORI
Washington, D.C., United States

Roundtable 06: Standardization of PROs and PROMs

Description:

Wouldn’t it be a great step forward in the field it we would all measure the same outcomes in our research projects and clinical practice, using the same measurement instruments? We will discuss barriers, opportunities, and recent developments for standardization of PROs and PROMs in research and clinical practice.

 

Speakers:

Caroline B. Terwee, PhD VU
University Medical Center
Amsterdam, Netherlands

Symposia

Concurrent symposium sessions showcase the research and science of the ISOQOL community. Symposium sessions have been selected following peer review of submitted abstracts.

Symposium sessions take place on Tuesday morning and Wednesday morning. Access to symposium sessions is included in conference registration.

Tuesday, 22 October | 11:00 am – 12:15 pm

Symposium 1: Unbiased Treatment Effect and Meaningful Change Detection in the Presence of PRO Missing Data: Updating historical practices to improve oncology outcomes

Sponsored by Pharmerit International

Moderator:

John Fastenau, PhD, Janssen, Raritan, NJ, United States

Discussant:

Scott Komo, DrPH, US FDA, Silver Spring, MD, United States

Individual Presentations:

Compliance Rules in Daily Diary Data: Avoiding Reductions in Power and Treatment Efficacy Bias

R. J. Wirth, PhD, Vector Psychometric Group, LLC, Chapel Hill, NC, United States

Estimating meaningful change in the context of covariate-dependent drop-out

Daniel Serrano, PhD, Pharmerit International, Bethesda, MD, United States

PROs in Survival Analysis and Detection of Treatment Efficacy

Charles Iaconangelo, PhD, Pharmerit International, Brooklyn, NY, United States

Symposium 2: Value-Based Health Care and Outcomes Research; a Short Bridge to Close a Long Gap

Moderator:

Katrin Conway, Mapi Research Trust, Lyon, France

Individual Presentations:

Use of Patient-Reported Outcome Measures (PROMs) to Evaluate Quality of Care: Challenges and Opportunities

Sarah Clifford, ICON, Los Angeles, CA, United States

Creating a Standard Set of Outcome Measures for Celiac Disease: the role of COAs across contexts

Saeid Shahraz, ICON PLC, Boston, MA, United States

ICHOM’s methodology for the development and implementation of standard sets to improve quality of care

Mona Khalid, BSc (Hons) MSc PhD, International Consortium for Health Outcomes Measurement, London, United Kingdom

Sizing the gap and designing the bridge: initial recommendations

Benoit Arnould, PhD, ICON, Lyon, France

Symposium 3: “Tell me more”: Qualitative and quantitative methods for eliciting supplementary data regarding patient experiences during clinical trials and observational studies

Moderator:

Linda Nelsen, MHS, GlaxoSmithKline, Collegeville, PA, United States

Individual Presentations:

Listening to the patient: The application and value of qualitative research for gathering patient insights during drug development and evaluation

Adam Gater, Adelphi Values, Macclesfield, United Kingdom

Challenges, considerations and solutions for implementation of qualitative interviews within clinical research studies: learnings from applications in a range of therapeutic areas

Linda Nelsen, MHS, GlaxoSmithKline, Collegeville, PA, United States

“Was it worth it?”: Use of the Patient’s Qualitative Assessment of Treatment (PQAT) to explore direct patients’ experience of drugs received during clinical studies

Aude Roborel de Climens, PhD, Sanofi, Lyon, France

Development of a patient-reported questionnaire to measure patient experiences of participating in clinical trials

Stephanie Manson, PhD, Novartis, East Hanover, NJ, United States

Symposium 4: Novel approaches and solutions to the challenges of measuring health-related domains and concepts across children of a range of ages

Moderator:

Nalin Payakachat, University of Arkansas for Medical Sciences, Little Rock, AR, United States

Individual Presentations:

Measuring complex experiences of health-care: the development of an innovative child-reported experience measure using participatory design.

Malin Berghammer, PhD, Department of Paediatrics, Queen Silvia Children’s Hospital, Gothenburg, Sweden

Innovative pediatric clinical outcome assessment (COA) administration and reporting strategies

Diane Turner-Bowker, PhD, Adelphi Values, Boston, MA, United States

Potential of Behavioral Data as Indicator of Quality of Life and Well-Being in Children: A Longitudinal and Naturalistic Study

Holger Muehlan, PhD, University of Greifswald, Greifswald, Germany

Computerised adaptive testing accurately predicts CLEFT-Q scores by selecting fewer, more patient-focused questions.

Conrad Harrison, University of Oxford, Oxford, United Kingdom

Wednesday, 23 October | 8:30 am – 9:45 am

Symposium 5: Incorporating quality of life into economic evaluation of cancer therapies: contributions of the Multi-Attribute Utility in Cancer (MAUCa) Consortium

Moderator:

Madeleine King, PhD, University of Sydney, Sydney, Australia

Individual Presentations:

Valuations of the QLU-C10D and FACT-8D: Canadian illustrations

Helen McTaggart-Cowan, Faculty of Health Sciences, Simon Fraser University, Burnaby, British Columbia, Canada

United States Utility Algorithm for the EORTC QLU-C10D and the FACT-8D: Multi-Attribute Utility Measures Based on Cancer-Specific Quality of Life Instruments

Dennis Revicki, PhD, Evidera, Bethesda, MD, United States

EORTC QLU-C10D valuation studies in various European countries – findings and outlook

Georg Kemmler, PhD, Department of Psychiatry, Psychotherapy and Psychosomatics, Medical University of Innsbruck, Innsbruck, Austria

UK utility weights for the cancer-specific EORTC QLU-C10D: Why, how and when to use?

Donna Rowen, PhD, University of Sheffield, Sheffield, United Kingdom

Symposium 6: Partnering with patients and caregivers in patient centered outcomes research: challenges and solutions

Moderator:

Tom Keeley, GSK, Uxbridge, United Kingdom

Discussant:

Marilyn Metcalfe, PhD, GlaxoSmithKline, Research Triangle Park, NC, United States

Individual Presentations:

Online patient communities: listening to the voice of the patient to optimise the study protocol to be used in a clinical study

Bethany Metcalfe, Join the Dots, Manchester, United Kingdom

Engagement of a Patient Advisory Group as partners to guide the design, conduct and interpretation of concept elicitation and cognitive debriefing interviews during Patient-Reported Outcome research studies

Charlotte Panter, MSc, BSc (Hons), Adelphi Values, Manchester, United Kingdom

Engagement with caregivers during the development and implementation of a survey to evaluate the impact of a rare neurodevelopmental disorder

Kate Williams, PhD, Acaster Lloyd Consulting, London, United Kingdom

Patients as Research Pioneers: a patient’s perspective on how to achieve effective use of PROs through engaging patients as partners

Yelak Biru, MS, CS, International Myeloma Foundation, Bentonville, AR, United States

Symposium 7: Improving PROs in Clinical Trials: The PROTEUS Consortium (Patient-Reported Outcomes Tools: Engaging Users & Stakeholders)

Moderator:

Claire Snyder, PhD, Johns Hopkins, Baltimore, MD, United States

Individual Presentations:

Tools to optimize PROs in clinical trials

Claire Snyder, PhD, Johns Hopkins, Baltimore, MD, United States

Strategies for implementing and disseminating the tools to optimize PROs in clinical trials

Michael Brundage, MD, MSc, Queen’s Cancer Research Institute, Kingston, Ontario, Canada

Symposium 8: Moving the interpretation of PRO scores forward: MIDs et al!

Moderators:

Bellinda King-Kallimanis, PhD, US FDA, Silver Spring, MD, United States
Kathleen Wyrwich, PhD, Pfizer, New York, NY, United States

Individual Presentations:

Estimating meaningful change: A practical example using existing datasets and prospective patient interview

Kim Cocks, PhD, Adelphi Values, Cheshire, United Kingdom

Critical insights from a large systematic review of anchor-based minimal important difference (MID) estimates for patient-reported outcome measures (PROMs)

Tahira Devji, PhD, McMaster University, Hamilton, Ontario, Canada

Effect of reliability on bias and precision of the ROC-based MID, predictive MID, and adjusted MID

Berend Terluin, MD, PhD, Amsterdam UMC, Amsterdam, Netherlands

Issues in Measuring Change and MIDs

Geoff Norman, PhD, McMaster University, Dundas, Ontario, Canada

SIG Symposia

Sunday, 20 October, 4:30 PM – 6:00 PM

Four concurrent symposia hosted by ISOQOL Special Interest Groups (SIGs) are held on Sunday, the pre-conference day. These symposia provide educational content 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 have been selected:

Health Preference Research SIG: Patient preferences about health-related quality of life and healthcare: why and how to use them

Health Preferences Research (HPR) explores how people value different aspects of health-related quality of life and healthcare. Evidence is used to make healthcare and resource allocation decisions; however, this raises the questions of whose preferences should be elicited, and whether preferences differ across populations.

Arguments for each perspective can be made: general population preferences for they do not have vested interests; healthcare professionals preferences for they may better understand the effects of healthcare delivery; patient and healthcare users preferences for the healthcare is provided for them and they have a greater understanding their personal impact.

There is renewed interest in elicitation of patient preferences due to methodology advances in elicitation of experienced utility and of preferences for treatment and healthcare delivery. This symposium will explore recent developments through a presentation of research findings from a panel of experts in the field of HPR and preference-elicitation.

Industry SIG: Integrating the patient perspective throughout the medical product lifecycle: Emerging opportunities

FDA is developing a series of guidance documents on patient focused drug development (PFDD) as required under Section 3002 of the 21st Century Cures Act. These guidance documents are to encourage a systematic approach toward inclusion of patient experiences and priorities throughout the medical product lifecycle. The 2019 ISOQOL Annual Meeting Industry Special Interest Group (I-SIG) symposium will focus on how to optimally integrate the patient perspective into clinical development programs throughout the product lifecycle from regulatory, industry and patient perspectives. This session will include dialogue on potential uses of patient experience data and future directions on qualitative and quantitative research. Examples will be used to illustrate, for example, how patient experience data can be used to inform clinical trial design, identification of concepts of interest, selection or development of clinical outcome assessments, patient preference for treatment, benefit-risk assessment, and labeling. Presentations will be followed by a panel discussion including the regulatory, industry and patient representatives and interaction with the audience to discuss the PFDD guidance documents and the practical impact they may have on patients, caregivers, clinicians, and industry.

New Investigators SIG: How to Write a Competitive Grant Proposal

This symposium will provide in-depth, comprehensive guidance from new and late career investigators who are experienced in how to develop and package a compelling grant application. As New Investigators, grant writing is expected, yet daunting. Many PhD programs fail to properly prepare their graduates to independently embark on this challenging endeavor. This symposium will carefully guide attendees through the critical components of a successful grant proposal (e.g., specific aims, highlighting significance or relevance of the proposed research and its anticipated impact, and developing a realistic budget) and offer opportunities for attendees to ask questions. Our carefully chosen panel consists of internationally-recognized leaders with expertise across health conditions and methodological areas who have demonstrated consistent success in securing external funding. Symposium speakers come from the U.S, Canada, and Germany; and hence will be able to highlight common and uncommon themes for success across different funding organizations and countries.

Patient Engagement and QOL in Clinical Practice SIGs: Patient engagement with PRO completion in clinical practice: Challenges and solutions

With PROs being increasingly used in clinical practice and patient care, there is an assumption that patients are engaged with their completion and use. But are we doing enough to encourage and support completions of PRO measures? What are the key motivators or obstacles that can influence patient engagement with PRO measures? What have we learned to date about patient engagement that can be applied to shape and guide the successful implementation of PROs into different clinical contexts? How does PRO completion impact patient engagement in self-care? This symposium aims to explore these topics by bringing together insight from members of the ISOQOL Patient Engagement and QOL in Clinical Practice Special Interest Groups. Drawing on first hand experiences from a collection of PRO initiatives across orthopedics, depression, and oncology, attendees will be invited to consider and discuss approaches that enhance the contribution of patients in ongoing clinical PRO adoption strategies.

Educational Workshops

Sunday, 20 October 2019

Morning Workshops | 9:00 am – 12:00 pm

Workshop 2: Theoretical and methodological foundations of latent variable measurement invariance

Workshop level: Advanced

 

Workshop Goals:

Theories of measurement validity emphasize the importance of evidence of measurement invariance for making valid comparisons on patient-reported outcome scores between different groups of people and across different points in time. This workshop will provide practical guidance on the choice, application and implementation of latent variable methods to assess equivalence or invariance in measurement between groups and over time. This guidance will be framed within a theoretical context that explains why measurement invariance matters and illustrates the implications of ignoring such invariance for different applications and uses of PRO instruments (e.g., clinical and administrative decision making, policy, and research).

Intended Audience

Health researchers who want to learn about the use of latent variable models for assessing measurement invariance of patient-reported outcome measures. Participants should have a basic understanding of factor analysis. It will be beneficial to be familiar with one or more of the following software packages: R, MPlus, SAS.

Outline

Part 1: Latent variable models and measurement invariance based on contemporary measurement validity theory and Zumbo’s Draper Lindley DiFinetti framework of measurement validation.

Part 2: Latent variable models for examining measurement equivalence or invariance between groups, including practical examples on the use of: a) structural equation models, b) multi-group confirmatory factor analysis, c) item response theory and RASCH models, d) multiple indicator multiple causes (MIMIC) models, and e) latent variable mixture models.

Part 3: Latent variable models for examining measurement invariance over time, including practical examples on the use of: a) longitudinal structural equation and item response theory models, and b) longitudinal latent variable mixture models.

 

Learning Objectives

  1. To understand contemporary theoretical foundations of latent variables and measurement invariance
  2. To know when and in what contexts to apply different latent variable models for examining measurement invariance between groups and over time
  3. Demonstrate the application of these models using a number of publicly available datasets and the following software packages: R, MPlus, SAS.

Organizers:

  • Richard Sawatzky, Trinity Western University, Langley, British Columbia, Canada
  • Lisa Lix, University of Manitoba, Winnipeg, Manitoba, Canada
  • Lara Russell, Centre for Health Evaluation and Outcome Sciences, Vancouver, British Columbia, Canada
  • Tolu Sajobi, PhD, University of Calgary, Calgary, Alberta, Canada
  • Bruno Zumbo, PhD, University of British Columbia, Vancouver, British Columbia, Canada

 

 

Workshop 3: Patient-focused endpoints: Defining, developing and analyzing PRO endpoints for optimal interpretability

Workshop level: Advanced

 

Workshop Goals:

The goals of this workshop are to:

  • Provide the context for patient-reported endpoints in clinical trials and real-world prospective studies,
  • Learn how to define appropriate endpoints from patient-reported outcome (PRO) measures, and
  • Learn techniques for statistically evaluating and presenting PRO endpoints for optimum interpretability.

Intended Audience

The workshop is intended for academics, outcomes researchers, and clinical trialists who design clinical trials and real-world prospective studies with patient-reported endpoints and/or who analyze PRO data.

Outline

  1. Background
    1. Importance of PRO endpoints:
      1. It is now mandated in the US that patients are active participants in drug development.
      2. Regulatory and reimbursement authorities in European countries have moved from considering PRO information supportive to required.
      3. As such, the ability to define and interpret these endpoints is increasingly critical.
    2. Considerations for PRO endpoints:
      1. PROs directly measure a patient’s symptoms, functional status, and health-related quality of life.
      2. These complex constructs require careful consideration to capture temporal relationships and severity of response.
      3. Variability in the scoring methodologies and recall periods makes interpretation of results is complex.
      4. Analytic approaches must address complexities to interpret conclusions for non-statistical stakeholders.
  2. Defining interpretable patient-focused endpoints
    1. A patient-centered endpoint quantifies patient experience in a meaningful way.
  3. Interpretation of patient-focused endpoints. Specifically:
    1. Evaluating meaningful change through responder analyses, including:
      1. Comparing proportions of responders at specific endpoints
      2. Evaluating clinical and symptomatic response jointly
    2. Cumulative likelihood of meaningful response
    3. Time to improvement or deterioration of symptoms or function, including:
      1. When to measure improvement versus deterioration
      2. Defining meaningful improvement/deterioration
      3. Inclusion of death in the event definition
    4. Single item analysis. Specifically:
      1. Why it is important to evaluate item-level response
      2. Heterogeneity of scales
      3. Analytic approaches to:
        1. describe distribution of responses
        2. estimate the likelihood of 1- or 2-grade change
        3. estimate time to 1- or 2-grade change.
    5. Missing PRO data
      1. How can we mitigate the impact of missing PRO response?
      2. Analytic methods for handling missing data

 

Learning Objectives

  1. Given a PRO measure, design three interpretable patient-focused endpoints for a clinical trial or real-world study;
  2. Articulate the importance of evaluating meaningful change and describe four ways in which to analyze within-person change while accounting for missing data;
  3. Describe the value of analyzing single items within a PRO scale including the concepts of item construct heterogeneity, temporal relationships to the endpoint and severity variability.

Organizers:

  • Lysbeth Floden, Clinical Outcomes Solutions, Tucson, AZ, United States
  • Melanie Bell, PhD, Mel & Enid Zuckerman College of Public Health, University of Arizona, Tucson, AZ, United States
  • Stacie  Hudgens, MA, (AbD), Clinical Outcomes Solutions, Tucson, AZ, United States

 

 

Workshop 4: Latent Dirichlet Allocation in Analyzing Free-Text Data in Quality of Life Research

Workshop level: Basic

 

Workshop Goals:

Latent Dirichlet Allocation (LDA) is a Big Data technique for analyzing enormous amounts of digital data (Blei, Ng, and Jordan, 2003). Much of this data is from people’s digital footprint, created as people go about their usual life online. The specific goals are:

  1. The focus will be on practical analytic skills.
  2. Theories will be explained with visual displays for accessibility.
  3. How to apply LDA to digital footprints and data collected directly from patients.
  4. Best practices in presenting the results.
  5. Limitations.

Intended Audience

This workshop is primarily for beginners, e.g., a QOL researcher who wants to examine electronic medical records to summarize adverse events. An advanced graduate student may want to examine Snapchat emojis to understand social media use in teenagers.

Workshop attendees should have a basic familiarity with the statistical tools that implement LDA and text processing tools, such as R or Python. Unfortunately, LDA is not yet supported by statistical packages frequently used by behavioral scientists, such as SPSS, Mplus, Stata or SAS. But the programming skills required are no more complicated than writing simple functions.

Outline

This workshop is a how-to guide to start or enhance your analytic skills in LDA. The first part will be a demonstration by the instructor so that you will quickly learn what LDA is about. We will use a publicly accessible data (about 20 newsgroups dataset) to learn the basics.

The second part of the workshop will involve hands-on practice. Syntax scripts will be made available to you before the workshop. Feel free to try them before we meet. During the workshop we will go over troubleshooting technical problems because they are probably the most frustrating part of learning an advanced analytic skill. Please consider bringing a laptop with you.

The third and final part of the workshop will involve analyzing free-text data collected directly from patients.  Novel Big Data analytics such as LDA offer researchers new tools to address research questions. We will conclude by discussing how LDA can be applied generally to your own research.

 

Learning Objectives

  1. This workshop is a how-to guide to start or enhance your analytic skills in LDA. Divided in three parts, this workshop will cover the basic LDA analytic skills. You will quickly learn what LDA is about and what its outputs look like. We will use a publicly accessible data source (listserv postings) to cover the basic steps: 1) importing the free-text documents; 2) preprocessing (tokenization and the removal of stop words, like ‘for’, ‘or’, ‘the’ that carry limited semantic information); and 3) constructing a document-term matrix for LDA. We will approach the technical details in a practical way so that you will find them easy and intuitive. Because we are dealing with huge amounts of data, data cleaning by hand using Excel is out of the question. Instead, we need to do these with more efficient tools.
  2. The second part of the workshop will involve hands-on practice. You will start from the beginning of the demonstration and type in the commands one by one and see what they do. Syntax scripts will be made available to you before the workshop. Feel free to try them before we meet. During the workshop we will go over debugging and troubleshooting technical problems because they are probably the most frustrating part of learning an advanced analytic skill. Because we will go over these commands step by step, the recommended R programming skills are not absolutely required. We will also tweak the LDA settings to see how they affect the results. Experimenting with model parameters may also facilitate a fuller understanding of the theory and statistical computation of LDA.
  3. The third and final part of the workshop will involve an application on free-text data collected directly from patients as part of a larger, prospective study of patient-reported outcomes. Using open-ended questions, we asked N = 211 patients with bladder cancer to write down what mattered the most to them as they underwent radical cystectomy and urinary diversion for bladder cancer. The goals were collected before surgery and again at six months after surgery. We will use LDA to extract the latent topics and themes stratified by time. We will go over model comparison metrics to determine the number of topics to extract. LDA showed that, prior to surgery, patients’ priorities were primarily in cancer surgery and recovery. Six months after surgery, patients’ goals changed. Novel Big Data analytics such as LDA offer researchers new tools to address research questions and may be directly applicable to your own research.

 

Organizer:

  • Yuelin Li, PhD, Memorial Sloan Kettering Cancer Center, New York, NY, United States

 

 

Afternoon Workshops | 1:00 pm – 4:00 pm

Workshop 5: How Rasch and Classical Test Theory Can Complement Each Other When Assessing the Reliability and Validity of Clinical Outcome Assessments: A Hands-on Workshop

Workshop level: Basic

 

Workshop Goals:

The goals of the workshop are to discuss Rasch measurement theory and classical test theory and how they can complement one another when evaluating clinical outcome assessments. Specific objectives are to: (1) describe basic concepts of classical test theory and how it can be used to measure reliability and validity; (2) detail introductory concepts and how/when to use Rasch measurement theory to measure reliability and validity; (3) discuss similarities, differences, and limitations of Rasch measurement theory, classical test theory, and item response theory, along with how they can complement one another; (4) detail assumptions, model properties, fit parameters, and recommendations for Rasch analysis using Winsteps software; and (5) provide participants a hands-on experience using the Rasch rating scale model to analyze the validity and reliability of a sample clinical outcomes measure.

Intended Audience

Participants interested in learning modern psychometric techniques for measuring validity and reliability of clinical outcome assessments would benefit from this workshop. The level of the workshop is set as introductory.

Outline

The workshop outline will be as follows:

  1. Overview of clinical outcome assessments including patient reported/centered outcomes;
  2. Classical test theory;
  3. Rasch measurement theory;
  4. How can Rasch, Classical test theory, and Item response theory complement one another?;
  5. Rasch model specifications and recommendations;
  6. Hands-on Rasch rating scale model analysis in Winsteps software.

 

Learning Objectives

  1. Participants will be able to discuss clinical outcomes assessments (COAs) including patient-centered outcomes, their components, item generation, biases, reliability and validity, scaling and responses as well as classical test theory. Specifically, discussion will be focused on qualitative and quantitative assessments of each these concepts and providing participants an overview of issues related to measurement. Emphasis will be placed on basic concepts of classical test theory and how it can be used to measure reliability and validity. The presentation format for this objective will be PowerPoint slides. Interaction will be encouraged with Q&A.
  2. Participants will be introduced to theory and applications of Rasch measurement with specific emphasis on the assumptions of this model in COA development and validation. Introductory concepts and how/when to use Rasch measurement theory to measure reliability and validity will be detailed. Similarities, differences, and limitations of Rasch measurement theory, classical test theory, and item response theory will be discussed, along with how they can complement one another. Assessment will be described in terms of person ability, scale reliability and validity, and item difficulty. Properties and requirements of Rasch models will be explained in detail. For dichotomous and polytomous data, model fit parameters and recommendations will be provided for analysis in WINSTEPS. Further, summaries of Rasch requirements, relevant WINSTEPS tables, and criteria-specific recommendations will be provided. The presentation format will be PowerPoint slides and handouts. Interaction will be encouraged with Q&A, and input on interpretation of example figures and tables.
  3. Participants will gain hands-on experience with using a Rasch rating scale model and practice procedures to run the analysis in WINSTEPS using the guidelines and recommendations learned during the session. Participants will be asked to download the free version of WINSTEPS ahead of time. A sample dataset (for example, sample responses to a questionnaire with a 4-point Likert scale) of less than 75 observations and analysis code will be provided. Instructors will walk through the analysis and highlight key procedures and result output table numbers, where the relevant coefficients and parameters can be found to effectively analyze the validity and reliability of the sample clinical outcomes measure. The presentation format of this learning objective will be analysis demonstration in WINSTEPS software and PowerPoint slides to facilitate discussion of sample results and figures. Interaction will be encouraged with instructors providing assistance with running analyses and group interpretation of findings.

Organizers:

  • Harman Dhatt, MPH, Apex Health Solutions & University of Arizona College of Pharmacy, Scottsdale, AZ, United States
  • Stacie  Hudgens, MA, (AbD), Clinical Outcomes Solutions, Tucson, AZ, United States
  • Terri Warholak, PhD, RPh, CPHQ, FAPhA, University of Arizona, Tucson, AZ, United States

 

 

Workshop 6: Digital storytelling: Sharing healthcare experiences as meaningful expression of health-related quality of life

Workshop level: Advanced

 

Workshop Goals:

Digital storytelling is an arts-based research approach that has more recently been used in the areas of healthcare advocacy, education, and practice. Based on a narrative research methodology, digital storytelling explores stories to gain a deeper and more reflective understanding of experiences. Digital stories are 3-5 minute narratives in the format of synthesized images, audio and text that may be shared on a public platform.  Through specific methodological steps, it takes complex stories and highlights meaningful experiences of patients to share with other patients, healthcare professionals, and researchers.  Using a participatory approach, digital storytelling in research is an effective means of expressing health, health status and well-being from the participant’s perspective. As digital storytelling emerges within circles of health research, the impact, methodology and ethical process need to be discussed to direct standardized implementation. This workshop will provide attendees with an overview of digital storytelling in health research with specific examples of the step-by-step process when working with patients. Attendees will also have the opportunity to create a digital story in the workshop session.

Intended Audience

  • Researchers interested in learning more about digital storytelling as an alternative way of communicating health status.
  • Patients interested in learning about and/or using digital storytelling.
  • Healthcare professionals interested in patient-oriented research.

Outline

  • Introduction of workshop facilitators, goals and format
  • Overview of digital storytelling
    • Narrative methods as theoretical framework
    • Uses and benefits of this research method
    • Potential challenges 
  • Provide examples of the format as carried out with participants
    • Digital storytelling design considerations
    • Sample digital stories
  • Guide participants through an interactive digital storytelling process
    • Participants create their own digital story using WeVideo™
  • Discussion and debrief

 

Learning Objectives

  1. At the completion of the workshop, attendees will be able to define digital storytelling and identify the uses of digital storytelling to describe and promote health-related quality of life. Attendees will be provided with a theoretical foundation for this method and examples of how digital storytelling has been used in quality of life research. Ongoing evaluation will occur throughout the session using a web-based program called Kahoot!™ to determine knowledge development and understanding. Attendees will also receive immediate feedback through Kahoot!™.
  2. At the completion of the workshop, attendees will describe the steps involved with digital storytelling and how it can be included in quality of life research. Through experiential learning, attendees will be able to apply the training they receive within the session to create their own digital stories using a well- recognized program WeVideo™. They will leave with an example of a digital story they can use for future reference. During the session the facilitators will show how digital storytelling is an alternative approach to hear patient perspectives of their health status and well-being. 

Organizers:

  • Elly Park, PhD MScOT, University of Alberta, Edmonton, Alberta, Canada
  • Mary Forhan, OT PhD, University of Alberta, Edmonton, Alberta, Canada
  • Allyson Jones, PhD, University of Alberta, Edmonton, Alberta, Canada

 

 

Workshop 7: Clinical outcome assessment in a multi-cultural context: Measurement challenges and solutions

Workshop level: Advanced

 

Workshop Goals:

Clinical outcome assessment (COA) in multi-cultural studies requires particular caution due to differences in language, culture, education, and differing standards of care. Each of these aspects presents a potential source of variability in measurement outcomes. If not adequately managed, this variability can potentially jeopardize the accurate capture of the targeted concepts and make the demonstration of treatment benefit more difficult. Cross-cultural equivalence of COAs being used in multi-cultural studies is, therefore, of particular importance. This workshop will present the challenges and discuss possible solutions related to this question including qualitative methods to minimize cross-cultural variability in measure development and translation, quantitative methods for exploration of cross-cultural equivalence of COAs, methods to assess whether a difference is a translation issue or cross-cultural difference, and suggestions for managing imperfect cross-cultural equivalence when using clinical trial data for treatment comparisons.

Intended Audience

This workshop is appropriate for all researchers having an interest in the impact of multiple cultures on research data.

Outline

  1. Introduction and objectives
  2. Why is the cross-cultural question important to clinical outcome assessments (COAs)?
  3. Qualitative methods to minimize cross-cultural variability in measurement development and translation
  4. Quantitative methods for the exploration of cross-cultural equivalence of COAs
    1. How much variability does cross-cultural heterogeneity add?
    2. What are the implications for multinational clinical trial results?
  5. Assessing equivalency outliers for cross-cultural variability: qualitative approaches
    1. When is it a translation issue and when is it a cross-cultural difference?
    2. Appropriate action strategies
  6. Coming to the key questions
    1. When and how do you determine that a COA is not cross-culturally equivalent?
    2. How does one manage imperfect cross-cultural equivalence of COAs in clinical trial data when comparing treatments?
  7. Closing Discussion

 

Learning Objectives

  1. Participants will be able to identify existing quantitative methods for exploring cross-cultural differences and their impact on data equivalence including methods for detecting potential measurement bias.
  2. Participants will be able to describe the complementary input that qualitative methods can provide in enhancing cross-cultural equivalence and investigating discrepancies.
  3. Participants will be able to outline a strategy to investigate cross-cultural equivalence of COAs using appropriate quantitative and qualitative methods and approaches to address imperfect COA equivalence in clinical trial data when comparing treatments.

Organizers:

  • Sonya  Eremenco, MA, Critical Path Institute, Tucson, AZ, United States
  • Mona Martin, RN MPA, Evidera, Inc., Seattle, WA, United States
  • Helen Doll, MSc DPhil, Clinical Outcomes Solutions, Folkestone, United Kingdom
  • Antoine Regnault, PhD, Modus Outcomes, Lyon, France
  • Lori McLeod, PhD, RTI Health Solutions, Research Triangle Park, NC, United States

With contributions from Stacie Hudgens, MA, (AbD), Clinical Outcomes Solutions, Tucson, AZ, United States

 

Workshop 8: What is Implementation Science and How Can It Help Us Integrate PROMs into Clinical Practice?

Workshop level: Basic

 

Workshop Goals:

This workshop will serve as a broad introduction to implementation science and how it can be used to help integrate PROMs into clinical practice. Participants will learn basic principles of implementation science and theories, and how to apply them through the use of case studies. Participants will also learn how implementation science theories differ from other existing social science frameworks. An overview of typical outcomes used in implementation science research will help illustrate how they complement PROMs and can be used to evaluate the effectiveness of implementing PROMs into practice. International case studies will cover diverse health conditions and populations such as orthopedics, cancer, and pediatrics. At the workshop’s conclusion, participants will be able to navigate the implementation science landscape through exposure to common theories used to help implement PROMs into clinical practices, and applied case studies.

Intended Audience

This workshop is intended for individuals who have a basic knowledge of HRQOL research and want to learn about implementation science. No prior experience with implementation science is necessary.

Outline

  1. Basic principles of implementation science, and Proctor’s taxonomy of outcome vs. PROMs
  2. Implementation science theories and frameworks appropriate for clinical practice
  3. Case Study 1: Implementing PRO-CTCAE in routine medical oncology (i-PARIHS framework)
  4. Case Study 2: Implementing PROMs into an Orthopaedic Surgical Clinic (K2A framework0
  5. Case Study 3: Implementing PROMs into pediatric daily clinical practice: The KLIK experience (CFIR framework)
  6. Interactive exercise: Linking theory to an implementation plan

 

Learning Objectives

  1. Describe basic implementation science principles, and their relevance for implementing PROMs into clinical practice
  2. Describe how implementation science outcomes differ from PROMs and how they can be used to measure implementation effectiveness
  3. Apply understanding of implementation science to integration of PROMs into clinical practice based on international case studies and interactive exercise

Organizers:

  • Angela Stover, PhD, University of North Carolina at Chapel Hill, Chapel Hill, NC, United States
  • Caroline Potter, PhD, University of Oxford, Oxford, United Kingdom
  • Natasha Roberts, PhD, Queensland University of Technology, Brisbane, Australia
  • Amy Cizik, PhD, University of Washington, Seattle, WA, United States
  • Hedy van Oers, PhD (c), Academisch Medisch Centrum Universiteit van Amsterdam, Amsterdam, Netherlands

 

 

Event Descriptions

In addition to the abstract-driven presentations, the Scientific Program Committee Chairs invite you to attend the following events at the 26th Annual Conference. Event attendance is included in conference registration fee unless noted.

Welcome Reception

Sunday, 20 October | 6:00 PM – 7:30 PM

Begin your time at the conference by visiting with old friends and networking with new friends and colleagues on the Bayview Lawn of the sunny Sheraton San Diego Hotel and Marina. Savor California flavors with provided light hors d’oeuvres or sip on a beverage from the cash bar while taking in panoramic views of the San Diego skyline.

Tricks of the Trade

Monday, 21 October | 5:40 PM – 6:20 PM

Organized by the New Investigator SIG

Speakers
Jan R. Boehnke and Claudia Rutherford, PhD; co-editors-in-chief of Quality of Life Research
David Feeny, PhD and Dennis Revicki, PhD; co-editors-in-chief of Journal of Patient-Reported Outcomes

How to develop a manuscript that will get published

Getting your manuscript published is exciting but involves many steps, from careful planning at the start of the study and attention to the objectives, research methods, measures, and statistical analysis during protocol development. We are lucky to have our esteemed editors from Quality of Life Research and Journal of Patient-Reported Outcomes discuss the critical steps that every scholar should take as he or she works to get their own work published. Topics covered in this session will range from articulating clear study objectives, developing a succinct writing style, and effectively conveying results through tables and figures. With an extended Tricks of the Trade session this year, we are sure to have a lively discussion!

Session is intended for new investigators in the QOL field; however, all researchers are welcome!

Mentor/Mentee Reception

Monday, 21 October | 6:30 PM – 7:30 PM

The ISOQOL mentoring program promotes career development and provides in-person networking opportunities for students and new investigators within the Society during the Annual Conference. Individuals interested in serving as a mentor will paired up with students and new investigators that have signed up for the program. This reception provides a forum for conversation and professional networking the exchange of knowledge in a relaxed atmosphere. Refreshments will be provided.

You can sign up to be a mentor or mentee by selecting your preference during conference registration. This event is free to attend but requires pre-registration to aid in the pairing process.

Experience San Diego Social Event*

Tuesday, 22 October | 6:30 PM – 10:30 PM

USS Midway Museum

The USS Midway is a retired US Navy aircraft carrier that is now permanently docked in San Diego, and serves as a naval aviation museum. Attendees have the unique opportunity to experience what it was like to live and work on a Navy ship, including the chance to sit in the cockpit of several helicopters and planes, walk through the sleeping bunks, and hear from veterans who experienced this life firsthand. The view from the Flight Deck provides a stunning view of both the San Diego bay and the city skyline, which is especially striking at night.

*Ticketed Event – Attendees and guests should purchase tickets through the conference registration form to attend this event. Space is limited, so we recommend you register early for Experience San Diego to secure your place! The ticket price includes heavy appetizers, along with two drink tickets, musical entertainment, and dancing. Plus, Experience San Diego attendees will also receive admission to the museum and a guided tour during the event. This is a truly unique way to toast another successful year of quality of life research, so don’t miss it!

SIG Meetings

Each Special Interest Group (SIGs) has 60 minutes scheduled for a business meeting during the Annual Conference. Room assignments will be printed in the final program.

Monday, 21 October | 12:05 PM – 1:05 PM

  • Australia and New Zealand SIG
  • New Investigator SIG
  • QOL in Clinical Practice SIG
  • Response Shift SIG
  • Translation and Cultural Adaptation SIG

Tuesday, 22 October | 12:20 PM – 1:20 PM

  • Current Funding Opportunities in QOL Research
  • Child Health SIG
  • Health Preference Research SIG
  • Industry SIG
  • Mixed Methods SIG
  • Patient Engagement SIG

Wednesday, 23 October | 7:30 AM – 8:30 AM

  • Japan SIG

Wednesday, 23 October | 12:10 PM – 1:10 PM

  • Canada PRO SIG
  • Chinese PRO SIG
  • Ibero America SIG
  • Psychometrics SIG
  • United Kingdom and Ireland SIG

Dine-Around

Sunday, 20 October | 7:15 PM

The ISOQOL Dine-Around event is a great opportunity to visit with fellow conference attendees while experiencing California’s culture! Individuals who participate in the ISOQOL Dine-Arounds will be placed in a group of six to eight people. A table is reserved for all groups at unique restaurants around San Diego.

All Dine-Around participants are responsible for paying for their own meal and arranging their own transportation. ISOQOL will coordinate a meeting location in the hotel lobby for Dine-Around groups to gather before the reservation.

Sign up for a Dine-Around here.

Awards and Member Business Meeting

Wednesday, 23 October | 10:35 AM – 12:05 PM

The Awards and Member Business Meeting on Wednesday morning 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 and encouraged to attend this session.

Fundraiser Events

Sunday, 20 October | 6:00 PM – 7:30 PM

This year’s Annual Conference will have several fundraising events with all proceeds going toward the Travel Scholarship Program. During the Welcome Reception of the conference, lawn games will be available! For just a minimum donation of $5 USD, attendees can play Connect Four, Jenga, ladder golf or bag toss. Individuals who are interested in playing can visit the Donation Table to pick up their game pieces and support the cause.

In addition to these pay-to-play games, ISOQOL will host its first ever Bag Toss Tournament. The first few rounds of the tournament will take place during the Welcome Reception, while the rest will follow during the refreshment breaks of the remaining conference days. There is a minimum buy-in of $25 USD for each two-player team. The two winners will each receive $100 USD Amazon gift cards. Limited spaces are available, so sign up soon!

Tournament Rules

Not playing? Support your favorite team by donating in their name. Every $100 USD a team raises equals an additional point to their final score.

Email info@isoqol.org to register for the Bag Toss Tournament.

Tuesday, 22 October | 6:30 PM – 10:30 PM

At the Experience San Diego Social Event, the DJ will be accepting donations to the #MovethePlane campaign. If you make a song request, donate a dollar or more to make sure you hear your favorite tunes!

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.