HealthMeasures User Conference Archive
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
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.
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.
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.
PROMIS: American Sign Language
Michael Kallen, PhD, Northwestern University
Health-related Quality of Life in Longitudinal Research on Aging Drivers (LongROAD): PROMIS-29 Profile v2.0
Thelma Mielenz, PhD, Columbia University
Factors Associated with Sleep Disturbance as Individuals Diagnosed with Colorectal Cancer Transition to Early Survivorship
Theresa Coles, MS, University of North Carolina at Chapel Hill, RTI Heath Solutions
Disease and Treatment Factors Associated with Lower Quality of Life Scores in Adults with MEN-1
Sneha Goswami, MD Candidate, Northwestern University
Individuals with Knee Impairments Identify Best Items from PROMIS® Pain Interference and Physical Function Item Banks
James Irrgang, PT, PhD, University of Pittsburgh
Practical Considerations for use of the NIH Toolbox in Down Syndrome Research
Alison Pritchard, PhD, Kennedy-Krieger Institute
Linking ASCQ-Me and PROMIS Pain Measures
San Keller, PhD, American Institutes for Research
Relationships Between Psychosocial and Physical Function Scores using PROMIS, ASCQ-Me, or Older, SCD-specific Measures: the SHIP-HU Study
Wally Smith, MD, Virginia Commonwealth University
Interpretation of the PROMIS Physical Function CAT Compared to the IKDC-SKF after ACL reconstruction
James Irrgang, PT, PhD, University of Pittsburgh
How Much Will I Improve After my surgery and Will I be Normal? The Critical Importance of Collecting and Discussing Patient Reported Outcomes Measures with Adult Spinal Deformity Patients
Shay Bess, MD, Presbyterian/St. Luke's Medical Center & Rocky Mountain Hospital for Children
Correspondence of Performance Based Physical Tests and PROMIS Physical Function Scores in Community Dwelling Elderly
Ryan Jacobson, DPT, PCS, George Fox University
Trends in PROMIS Scores in the Early Post-Operative Period Following Lateral Ankle Ligament Reconstructive Techniques
Allison McIntyre, MPH, University of Rochester Medical Center
Validity of the Healing Encounters and Attitudes Lists (HEAL) in Persons with Ongoing Pain
Carol Greco, PhD, University of Pittsburgh
Generalizability and Validation of PROMIS Scores to Predict Surgical Success in Foot and Ankle Patients
Jeff Houck, PT, PhD, George Fox University
Computer-based Administration of Health Literacy and Functional Literacy Measures in Physical Rehabilitation Populations
Elizabeth Hahn, Northwestern University
Using PROMIS to Assess QoL for Children with Brain Tumors
Jin-Shei Lai, PhD, Northwestern University
Characterizing Patients with Patient Acceptable Symptom State (PASS) after Selected Foot and Ankle Orthopedic Procedures Using Patient Reported Outcomes
Jeff Houck, PT, PhD, George Fox University
The Distribution of PROMIS Domains among Patients Undergoing Spine Surgery
Amy Cizik, PhD, MPH, University of Washington
Assessment of Health-Related Quality of Life in Adults Hospitalized with Sickle Cell Disease Vaso-Occlusive Crisis
Kimberly Esham, MD, Tufts Medical Center
Understanding the Need for Assistance when Completing Measures of Patient Reported Outcomes in Huntington Disease
Elizabeth Hahn, Northwestern University
Cross-sectional Investigation of the Effects of Psychiatric Service Dogs on War Veterans with PTSD
Kerri Rodriguez, MS, Purdue University
Performance of PROMIS and Legacy measures Among Advanced Breast Cancer Patients and their Caregivers
Alla Sikorskii, PhD, Michigan State University
Change in CRP, Cortisol, and Quality of Life Among Cancer Survivors Following 26 Weeks of Exercise
Jeannette Ricci, Michigan State University
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.
HealthMeasures and the Future of PRO-based Quality Improvement Performance Measures
Helen Burstin, MD, MPH, Chief Scientific Officer, National Quality Forum
Clifford Ko, MD, Director, Division of Research and Optimal Patient Care, American College of Surgeons
Incorporating PROs into the EMR: The Northwestern Medicine Orthopaedic Surgery Joint Replacement Pilot
Surabhi Bhatt, BS, Northwestern Medicine; Begum Kutay, MS, Northwestern Medicine
Incorporating PROMIS Symptom Measures into Primary Care Practice: A Randomized Trial
Kurt Kroenke, MD, Indiana University
Implementing PROMIS for Routine Screening in Ambulatory Cancer Care
Sofia Garcia, PhD, Northwestern University
PROMIS-29 v2.0 Physical and Mental Health Summary Scores
Ron Hays, PhD UCLA
Introduction to the PROMIS-Preference (PROPr) Summary Score
Janel Hanmer, MD, PhD, University of Pittsburgh
Feasibility of Home Health Care Patients’ Self-Administration of the PROMIS Global Health Survey
Jennifer Riggs, PhD, RN, ABT Associates
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
Measuring Global Health in Large Population Surveys and Update on ECHO (Environmental Influences on Child Outcomes)
David Cella, PhD, Northwestern University
Courtney Blackwell, PhD, Northwestern University
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
Applying Custom Technologies: User Experiences
Technical Evaluation of Implementing Patient-reported Outcomes Measures into an Electronic Health Record
Heather Gold, PhD, NYU School of Medicine
COMPASS-CP: Precision Health at Its Best
Pamela Duncan, PhD, Wake Forest Baptist Health
The Passport to Wellness: Mobilizing the Learner Workforce to Describe Health Determinants of Defined Populations
Leah FitzGerald, PhD, Mt. St. Mary's University
Documenting sickle cell disease health-related quality of life in the electronic medical record
Lynne Neumayr, MD, UCSF Benioff Children’s Hospital Oakland
HealthMeasures Scoring Service Demo
Using HealthMeasures in Epic
Richard Gershon, Northwestern University
Michael Schachter, Epic Business Analyst, Northwestern University
Christa Martens, MPH, Northwestern University (Nelson sidecar example, per PCORI presentation)
Accessing HealthMeasures in OBERD and REDCap
Michael Bass, MS, Northwestern University
REDCap - Paul Harris, PhD, Vanderbilt University
OBERD - Otho Plummer, PhD and Nathan Bleigh, M.Sc.
OBERD Think Tank
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).
Software Alternatives for IRT analyses
Ron Hays, PhD, UCLA
Alternative Approaches to Addressing Non-Normal Distributions in the application of IRT Models
Steven Reise, PhD, UCLA
“Real-time” short form development: Applying item information to obtain “live” score-level reliability estimates for evaluating expected short form performance
Michael Kallen, PhD, Northwestern University
Assessing HIV-associated cognitive impairment
Bob Heaton, PhD, UCSD
Multi Center Research: Cognitive data in the SEARCH for Diabetes in Youth Study
Greta Wilkening, PsyD, University of Colorado
Cognition Assessment in TBI using NIH Toolbox
David Tulsky, PhD University of Delaware
NIH Toolbox Equivalency Study
Jerry Slotkin, PhD, University of Delaware
Capturing the Effect of COMT Inhibition on Sequelae of Brain Injuries with NIHTB and TBI-QoL
Emily Adams Berich, BS, Sheppard Pratt-Lieber Research Institute
Understanding Patient Reported Outcome Measures in Individuals with Neurodegenerative Diseases that Include Cognitive Decline
Noelle Carlozzi, PhD, University of Michigan
PROMIS, Neuro-QoL, SCI-QOL, and TBI-QOL in Neurorehabilitation
David Tulsky, PhD. University of Delaware
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
Completing the Circle: Novel Methods for using PRO Scores in Shared Decision-Making and Patient Self-Management
Karon Cook, PhD, Northwestern University
Bringing the Clinical Potential of PROMS to Patients Receiving Orthopedic Care
Julie Fritz, PT, PhD, University of Utah
Evaluating Priorities and Interventions in Spinal Cord Injury Rehabilitation
Vanessa K. Noonan, PhD, PT, Rick Hansen Institute
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.