2019 HealthMeasures User Conference Archive
The 2019 HealthMeasures User Conference brought together more than 220 clinicians, researchers, and other leaders in outcomes assessment to share best practices, discuss implementation strategies and explore emerging trends in a user-driven forum. The two-day conference offered plenary sessions as well as concurrent breakout sessions featuring PROMIS®, Neuro-QoL™, ASCQ-Me® and NIH Toolbox®.
Highlights and slides from plenary sessions
This session presented a proposed framework1 for collecting and using outcomes assessments in ways that provide utility and value to multiple healthcare stakeholders (e.g., patients, clinicians, researchers, payers, quality leaders). Panel members representing each of these stakeholder groups shared their experiences, challenges and successes implementing and using outcomes assessments in a range of applications, including:
- Clinical care and research in the inpatient rehabilitation setting
- Psychosocial distress screening for patients in oncology
- Clinical decision-making, research, and pay-for-performance in orthopaedics
This session focused on emerging trends in research, technology, clinical care, and patient engagement that are shaping the future of outcomes assessment. Topics explored included:
- The in-development MobileToolbox Library of smartphone-based assessments designed to support earlier detection of cognitive decline
- The potential (and privacy risks) associated with use of voice recognition software to administer PRO measures
- The impact that FHIR (Fast Healthcare Interoperability Resources) can have on the ability for organizations to share PRO data
- The critical need for ongoing work to help clinicians and patients better interpret, understand, and meaningfully use the results of outcomes assessments
- The importance of continued methodological, observational, and interventional studies to support the application of person-centered tools in a wide range of settings and in population health.
Slides from Concurrent Breakout Sessions
PRO Track 1
Measurement invariance of the PROMIS Global Health measure in a large prospective cancer cohort
Elizabeth Fallon MPH, PhD, American Cancer Society
Using PROMIS tools to assess change in patients’ experiences of anxiety, depression, and pain among cancer survivors in a survivorship clinic
Erin Peregrine Antalis, PhD, University of Michigan
Nathan E. Dodds, BS, University of Pittsburgh, Northwestern University
Ann Kerlin, BBA, MDiv, MA, PhD, LPC, Luther Rice College & Seminary
Deborah Mattila, MLIS, CIBMTR / National Marrow Donor Program
Utilizing PROMIS measures for pain management
Mehmet Kazgan, MSc, MBA, cliexa
Implementation and utilization of patient-reported outcomes at the behavioral health point-of-care
Robert Schloesser, MD, Sheppard Pratt Health System
Shelley Collins, BA, Shriners Hospital for Children-Salt Lake City
Courtney K. Blackwell, PhD, Northwestern University Feinberg School of Medicine
Jin-Shei Lai, PhD, OTR/L, Northwestern University
Heather Brown, MSPT, Kaiser Permanente
Sherif M. Badawy, MD, MS, Ann & Robert H. Lurie Children's Hospital of Chicago
ASCQ-Me and PROMIS in the Sickle Cell Disease Implementation Consortium Needs Assessment: Follow-up
Marsha Treadwell, PhD, UCSF Benioff Children's Hospital Oakland
Maureen Cottom, MBA, PMP, Shriners Hospitals for Children
Molly McGuire, MPH, Texas Scottish Rite Hospital for Children
Sherif M. Badawy, MD, MS, Ann & Robert H. Lurie Children's Hospital of Chicago
PRO Track 2
PROMIS domain scores are associated with utilization in an outpatient sample of neurology patients
Janel Hanmer, MD, PhD, University of Pittsburgh Medical Center
Examination of the PROMIS-29 health scales in patients with human immunodeficiency virus (HIV)
Benjamin D. Schalet, PhD, Northwestern University, Feinberg School of Medicine
Translation and linguistic validation of the 6 PROMIS profile domains for adults in Korean
Juhee Cho, MA, PhD, Center for Clinical Epidemiology, Samsung Medical Center
Multidimensional computer adaptive testing with PROMIS item banks
Michael Bass, MS, Northwestern University
Kathleen Fear, PhD, University of Rochester Medical Center
The Neuro-QoL Utility (NQU) Scoring System
Barry Dewitt, PhD, Carnegie Mellon University
Anna Fishbein, MD, Ann & Robert H. Lurie Children's Hospital of Chicago
Brocha Z. Stern, MOT, OTR, CHT, New York University
Faraz Ahmad, MD, MS, Northwestern University
Maggie Morris, Bravado Health
Hua Zheng, PhD, University of Massachusetts Medical School
Implementing PRO-based patient-clinician shared decision reports in the learning healthcare system
Christina Bond, MS, Patient Research Group
Characterizing health-related quality of life in narcolepsy: A mixed-methods study
Cameron Moore, BS, Northwestern University Feinberg School of Medicine
Using PROMIS in batterer intervention programs: Towards program evaluation
Colleen E. Crangle, PhD, University of Louisville / Converspeech LLC
Development, validation and interpretation of the PROMIS Itch Questionnaire
Jonathan Silverberg, MD, PHD, MPH, Northwestern University
Mindful Measures: Creating item banks of mindfulness using PROMIS® methodology
Stephen J. Suss Jr., BS, University of Pittsburgh
Therese A. Nelson, MLA, AM, LSW, Northwestern University
Devin Peipert, PhD, Northwestern University
NIH Toolbox
The current state of the NIH Toolbox
Richard Gershon, PhD, Northwestern University
The NIH Toolbox Cognitive Battery for special populations: The case of intellectual disabilities
David Hessl, PhD, University of California - Davis
Development of embedded performance validity indicators in the NIH Toolbox Cognitive Battery
Christopher Abeare, PhD, University of Windsor
ARMADA: Advancing Reliable Measurement in Alzheimer’s Disease and Cognitive Aging
Devin Peipert, PhD, Northwestern University
Validity and utility of the NIH Toolbox for assessment of prodromal Alzheimer’s and dementia
Katherine Hackett, Temple University
Utilization of NIH Toolbox Cognition Battery in a rare disease conference setting
Juliet Monet Torres, Ann & Robert H. Lurie Children's Hospital of Chicago
Using the NIH Toolbox with transgender and non-binary youth
Victoria Kolbuck, MSW, Ann & Robert H. Lurie Children's Hospital of Chicago
Impact of a gluten free diet on celiac disease as measured by the NIH PROs
Jeffrey Cassisi, PhD, Univ. of Central Florida
The Spanish version of the NIH Toolbox: Overview and development
Rina Fox, PhD, MPH, Northwestern University
Natacha Akshoomoff, PhD, University of California – San Diego
Carly Strohbach, CCRP, Ann & Robert H. Lurie Children's Hospital of Chicago
Kaitlin Casaletto, PhD, University of California – San Francisco
Judy Frain, PhD, RN, Barnes Jewish College
Using the NIH Toolbox Cognition and Emotion Batteries to predict neural markers of psychopathology
Raluca Petrican, PhD, University of Toronto
We thank the following organizations for their support as 2019 HealthMeasures User Conference sponsors: