1. 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

2. 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

3. 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

4. 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.

5. NIH Roadmap for Medical Research

6. 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.

7. 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

8. The PROMIS of a better future…
A publicly available, adaptable and sustainable Internet-based system that will:
Create item banks for precise, valid, and efficient health status assessment via short forms or computer-adaptive testing (CAT)
Collect and analyze patients’ responses
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)

9. PROMIS Network ● University of Washington Stony Brook University ●
● University of Pittsburgh
Evanston/Northwestern ♥
● NIH
● Stanford University
UNC –Chapel Hill ●
● Duke University

10. PROMIS integrates the fields of…
Information Technologies
PROMIS
Cognitive Aspects of Survey Methods
Qualitative Research Methods
Survey Research
Psycho- metrics
This project will utilize the advances in information technologies, the strengths of modern measurement theory, and the contributions from the fields of psychometrics, cognitive psychology, and health survey methods to develop a new and dynamic PRO measurement and reporting.

11. Positive Psychological Functioning
PROMIS Domain Framework for PRO Indicator Development
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
Negative Impacts of illness
Anxiety
Anger/Aggression
Depression
Substance Abuse
Performance
Satisfaction
Physical Health
Mental Health
Social Health
Self-reported Health
Other
Cognitive Function
Emotional Distress
Role Participation
Social Support
Pain
Fatigue
Sleep/Wake Function**
Sexual Function
Symptoms
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

12. PROMIS - Multiple Delivery Platforms
Telephone Interview
Self Administered
Personal Interview
Dynamic
Assessments
Interactive Voice Recognition TV
Hand-held Device
Internet
Administered

13. What is the PROMIS Time Line?
: Choose specific domains Identify, review instruments and items : Build item pools in 5 domains Collect response data Create alpha version of CAT Build collaborative alliances : Conduct final calibration process Put CAT into final form Conduct second major network project Feasibility tests and User Group meetings Build sustaining partnerships

14. 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
--Any or all of these are worthwhile perspectives to take on a research project

15. 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

16. 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