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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®.

See the 2019 HealthMeasures User Conference program>>

See the 2019 HealthMeasures User Conference Abstract Book>>

Highlights and slides from plenary sessions

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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

1.    Franklin P, Chenok K, Lavalee D, Love R, Paxton L, Segal C, Holve E. Framework To Guide The Collection And Use Of Patient-Reported Outcome Measures In The Learning Healthcare System. EGEMS (Wash DC). 2017 Sep 4;5(1):17. PMID: 29881737

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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

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

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

NIH Toolbox

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

We thank the following organizations for their support as 2019 HealthMeasures User Conference sponsors:


2019 sponsor logo includes alkermes 06112019