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HealthMeasures User Conference

The 2017 HealthMeasures User Conference brought together more than 160 clinicians, researchers, and other leaders in the field of outcome assessment to discuss case studies, implementation solutions, research advances and emerging issues impacting HealthMeasures Users.

Highlights and Slides from Plenary and Breakout Sessions

Plenary 1 v2

Panel members described factors that will gradually facilitate the wider adoption of outcome measures, including:

  • A move from process-oriented measures to outcome-oriented measures, providing an opportunity to phase out burdensome measures and replace them with brief and precise measures that are easy to administer and integrate in clinical workflows.
  • Mobile patient portals, real-time data transfer to the EHR, improved data visualization techniques, and other technology-related advances that will change how assessments are administered and utilized at the point of care.
  • Effective provider education and engagement that demonstrates how outcomes assessments can ultimately save time and improve the quality of care.

Plenary 2 v2

Members of this panel discussed the opportunities and challenges associated with large-scale collection and analysis of patient-reported outcomes (e.g., across healthcare systems, within population health studies). Panel members noted:

  • The potential for real-time data collection that is being created by the fusion of ecological momentary assessment (EMA), item response theory (IRT), and patient-reported outcomes (PROs).
  • The challenge of properly integrating and displaying PROs with other forms of outcomes data, especially sensor data.
  • The importance of proper PRO data integration within the EHR and ongoing data quality management to ensure data can be used in a meaningful way to support clinical decision-making, predictive modeling, and other forms of analysis.

Plenary 3

Michelle Campbell, a reviewer and scientific coordinator with the Food and Drug Administration (FDA), detailed efforts that the agency is leading to:

  • Encourage the development and implementation of patient-focused clinical outcome assessments (COAs) in clinical trials to support drug approvals and labeling. At the center of this effort is the recognition that patients are the experts on living with a chronic disease, so benefit and risk information coming out of the drug development program must directly address their concerns.
  • Incorporate COAs into patient-focused clinical trial endpoints and, ultimately, ensure that clinical benefit and risk is described in labeling in terms of the outcome of interest measured.
  • Qualify several types of COAs for inclusion in trials, including patient-reported outcomes. Dr. Campbell highlighted several PROMIS measures currently undergoing the FDA qualification process and areas of HealthMeasures research that can inform the FDA’s efforts.

View the slides for HealthMeasures in the Regulatory Setting: The FDA Perspective>>

HealthMeasures User Conference Slides

Track A: Advancing Clinical Care

Clinicians and researchers from a wide range of institutions and settings shared innovations and lessons learned from their use of HealthMeasures to support clinical trials and clinical decision-making. Several presentations highlighted:

  • Nuances to consider when administering and interpreting assessments in specific populations (e.g., elderly patients with vision and hearing impairment, people with low health literacy),
  • The potential for patient-reported outcomes to help predict patient outcomes from surgery and other clinical interventions under consideration.
  • Clinician perceptions regarding the value of assessment data in facilitating conversation and shared decision making with patients.

Track B: Enhancing Quality Measurement

Presentations in this track highlighted key factors that will influence the adoption of PRO-based quality measures, including:

  • Clinicians, patients, and professional medical associations coming together to provide input as to which measures will be meaningful for clinical care.
  • Establishing a balance between universal and specialty-focused measures without undo patient burden.
  • Standardizing outcome assessments and quality metrics across clinics to aid comparisons.
  • Overcoming technological and workflow barriers to make actionable data available in real-time at the point of care.
  • Advancing measurement science to utilize PROs to evaluate healthcare quality.

PROMIS and the American Joint Replacement Registry: National implementation of PROMIS in a clinical data
registry
Caryn Etkin, PhD, MPH, American Joint Replacement Registry

Making a Swedish PROMIS: A Needs Assessment
J.E. Chaplin, PhD, AFBPsS, Sahlgrenska Academy at University of Gothenburg

ASCQ-Me and PROMIS in the Sickle Cell Disease Implementation Consortium Needs Assessment and Registry
Marsha Treadwell, PhD, Children’s Hospital Oakland Research Institute
Ellen Werner, PhD, MA, National Heart, Lung, and Blood Institute

Track C: Deploying Digital Tools

Presentations in this session demonstrated that the clinical implementation and administration of HealthMeasures has been proven feasible in many setting, but work remains to make the data more interpretable and actionable. Innovations shared in this track included:

  • Use of QR Codes to “log-in” patients on tablets in order to establish a link between clinical data and PRO data)
  • Unique applications of the NIH Toolbox and PROMIS iPad apps with unique populations, including adults with cognitive disabilities.
  • Use of HealthMeasures within Epic and cloud-based data collection systems such as REDCap and OBERD

The HealthMeasures API: Overview and User Experiences
Michael Bass, MS, Northwestern University

University of Utah
Rebecca Johnson, MPH, University of Utah
Joshua Spuhl, University of Utah

University of Rochester
Jeff Houck, PT, PhD, George Fox University

NYU Langone Health
Heather Gold, PhD, NYU School of Medicine
Raj Karia, MPH, NYU School of Medicine

HealthMeasures Scoring Service Demo

Track D: Driving the Science

Presentations in this track illustrated how measurement science has become increasingly focused on clinical research and clinical applications, addressing very local and practical questions. Sessions included:

  • An overview of software options for running IRT calibrations
  • An innovative Excel program designed to inform the conversation between clinicians and psychometricians as they partner in selecting items for short forms.
  • A symposium dedicated to the Pediatric Patient-Reported Outcomes for Children with Chronic Diseases (PEPR) and the research they have begun in pediatric chronic disease.
  • A concluding session exploring novel ways to not just obtain precise scores of domains that matter to patients, but also to use those scores in ways that matter to patients (e.g., shared decision-making and self-management tools).

Advancing the Science of Pediatric Patient-Reported Outcomes for Children with Chronic Diseases: Update from the PEPR ConsortiumUpdate from the PEPR Consortium
Brandon Becker, PhD, MPH, Children’s Hospital of Philadelphia
Michelle Campbell, PhD, Center for Drug Evaluation and Research, U.S. Food and Drug Administration (FDA)
Richard Gershon, PhD, Northwestern University
Laura Schanberg, MD, Duke University Medical Center
Carole Tucker, PT, PhD, Temple University
James Witter, MD, PhD, National Institute of Arthritis and Musculoskeletal and Skin Diseases

Pre-Conference Workshop

Introduction to Person-Centered Assessment

A 90-minute webinar, Introduction to Person-Centered Assessment is now available for anyone looking for a brief introduction and practical tips to help them select, administer, score, and interpret PROMIS, Neuro-QoL, ASCQ-Me and NIH Toolbox measures in clinical and research settings.

Nan Rothrock, PhD, Northwestern University
Karon Cook, PhD, Northwestern University

We thank the following organizations for their contributions as 2017 HealthMeasures User Conference sponsors: Bristol-Myers Squibb, Corporate Translations, Oberd, BrightOutcome, Pfizer, FACIT.org/FACITtrans.

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