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
Initiative
Explain 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 Pathways
to Discovery
NIH
Research Teams
of the Future
Re-engineering the
Clinical Research Enterprise
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’ responses
3. Provide instant health status reports to users to:
Enhance research
Improve clinical decision-making
Facilitate policy-making by health plan and systems
and public programs
4. Support disease-specific research applications as
well (e.g., cancer)
PROMIS Network
● University of Washington
Stony Brook University
●
● University of
Evanston/Northwestern ♥
● NIH
Pittsburgh
● Stanford University
UNC –Chapel Hill ●● Duke University
PROMIS integrates the fields of…
Information
Technologies
Cognitive
Aspects of
Survey
Methods
Psychometrics
PROMIS
Qualitative
Research
Methods
Survey
Research
PROMIS Domain Framework for PRO
Indicator Development
Function/Disability
Upper Extremities: grip, buttons, etc (dexterity)
Lower Extremities: walking, arising, etc (mobility)
Central: neck and back (twisting, bending, etc)
Activities: IADL (e.g. errands)
Physical
Health
Pain
Fatigue
Satisfaction
Symptoms
Sleep/Wake Function**
Sexual Function
Other
Anxiety
Selfreported
Health
Depression
Emotional Distress
Anger/Aggression
Substance Abuse
Mental
Health
Negative Impacts of illness
Cognitive Function
Positive Impacts of Illness
Satisfaction
Satisfaction
Social
Health
Satisfaction
Positive
Psychological
Functioning
Role Participation
Social Support
•Self Concept
•Stress Response
•Spirituality/Meaning
•Social Impact
Meaning and Coherence (spirituality)
Mastery and Control (self-efficacy)
Subjective Well-Being (positive affect)
Performance
Satisfaction
PROMIS - Multiple Delivery Platforms
Telephone
Interview
Self
Administered
Personal
Interview
Dynamic
Assessments
TV
Hand-held
Device
Internet
Administered
Interactive
Voice
Recognition
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
wiriley@mail.nih.gov
NCI Program Contact for Cancer/HSR:
Steven Clauser, PhD
clausers@mail.nih.gov