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Patient-Reported Outcomes Measurement Information
System (PROMIS): Opportunities in Health Services Research
Steven Clauser, Ph.D.National Cancer Institute
Presented at the Academy Health 37th Annual Meeting, June 1, 2007
TODAY’S AIMS:
Describe the NIH Roadmap PROMIS InitiativeExplain the PROMIS methods, measures and/or resources of potential interest to health services researchers Explore case studies of how PROMIS research tools can enhance health services research
Discuss how you can become involved
Why Develop a Trans-NIH “RoadMap” Initiative?
Revolutionary and rapid changes in science
Increasing breadth of mission and growth
Complex organization (27 institutes and centers, multiple program offices)
Structured by disease, organ, life stage, disciplines ….
Rapid convergence of science
What is the NIH Roadmap?
A framework of priorities the NIH as a whole must address to optimize its entire research portfolio. – Developed with extensive input from stakeholders,
scientists, NIH research staff and providers
A vision for a more efficient and productive system of biomedical and behavioral research.
A set of initiatives that are central to extending the quality of healthy life for people in this country and around the world.
NIH Roadmap for Medical Research
New Pathwaysto Discovery
Re-engineering theClinical Research Enterprise
Research Teamsof the Future
NIH
Re-engineering the Clinical Research Enterprise
Recast the NIH entire clinical research system
– Create new partnerships of research with organized patient communities, community-based health care providers, industry, and academic researchers.
– Develop new paradigms in how clinical research information is collected, used, and reported.
– Adopt advances in information technology, psychometrics, and qualitative, cognitive, and health survey research.
PROMIS RoadMap Goal:
• Create highly valid and reliable item banks and associated computerized adaptive testing• Encourage wide adoption to improve assessment of
• self-reported symptoms • other health-related quality of life
domains • across a wide range of chronic diseases
The PROMIS of a better future…A publicly available, adaptable and sustainable
Internet-based system that will:1. Create item banks for precise, valid, and efficient
health status assessment via short forms or computer-adaptive testing (CAT)
2. Collect and analyze patients’ responses3. Provide instant health status reports to users to:
Enhance researchImprove clinical decision-makingFacilitate policy-making by health plan and systems and public programs
4. Support disease-specific research applications as well (e.g., cancer)
PROMIS NetworkPROMIS Network
UNC –Chapel Hill ● UNC –Chapel Hill ●
● Duke University● Duke University
● Stanford University● Stanford University
Stony Brook University
●
Stony Brook University
●● University of Pittsburgh● University of Pittsburgh
● University of Washington● University of Washington
Evanston/Northwestern ♥Evanston/Northwestern ♥
● NIHNIH● NIHNIH
PROMIS integrates the fields of…
InformationTechnologies
PROMIS
CognitiveAspects of
SurveyMethods
QualitativeResearchMethods
SurveyResearch
Psycho-metrics
PROMIS Domain Framework for PRO
Indicator Development
Negative Impacts of illness
Anxiety
Anger/Aggression
Depression
Substance Abuse
Performance
Satisfaction
Physical Health
Satisfaction
Mental Health
Satisfaction
Social Health
Satisfaction
Self-reported Health
Satisfaction
Other
Cognitive Function
Emotional Distress
Role Participation
Social Support
•Self Concept•Stress Response•Spirituality/Meaning•Social Impact
Positive Impacts of Illness
Subjective Well-Being (positive affect)
Meaning and Coherence (spirituality)
Mastery and Control (self-efficacy)
Positive Psychological Functioning
Pain
Fatigue
Sleep/Wake Function**
Sexual Function
Symptoms
Upper Extremities: grip, buttons, etc (dexterity)
Central: neck and back (twisting, bending, etc)
Activities: IADL (e.g. errands)
Lower Extremities: walking, arising, etc (mobility)Function/Disability
PROMIS - Multiple Delivery Platforms
InteractiveVoiceRecognition
InternetAdministered
Personal Interview
Self Administered
Telephone Interview
Hand-heldDevice
DynamicAssessments
TV
What is the PROMIS Time Line?2004-05: Choose specific domains
Identify, review instruments and items
2006-07: Build item pools in 5 domains
Collect response data
Create alpha version of CAT
Build collaborative alliances
2008-09: Conduct final calibration process
Put CAT into final form
Conduct second major network project
Feasibility tests and User Group meetings Build sustaining partnerships
PROs Importance for HSR Physicians focus largely on technical aspects of care and survival, but are increasingly interested in symptom response and patient functioning
Patients focus on survival, quality of life, and experience with care
– These factors include health status, functional and emotional status, access, communication, coordination of care, family inclusion, education, respect, and economic burden
– Many of these measures can only come from patients’ Patient Reported Outcomes (PROs)
Policymakers focus on all domains – treatment efficacy, employee satisfaction, time out of work, reduced disability, overall health and health costs
What is the PROMIS Potential for Health Services Research?
Enhance national capacity to – evaluate effectiveness of health interventions
throughout the care continuum - prevention, diagnosis, treatment, rehabilitation, palliation
– monitor progress against burdens of disease– improve doctor-patient communication and
decision-making in clinical practice.– support a wide range of studies on the
determinants of health care utilization, quality of care, and health outcomes
PROMIS Website http://www.nihPROMIS.org/
NIH Program Contact for PROMIS:William (Bill) Riley, PhD
Acting Program Director, PROMIS National Institute of Mental Health
NCI Program Contact for Cancer/HSR: Steven Clauser, PhD
