UCSF CER - What PCORI Wants (Symposium 2013), Kathryn Phillips

1. The Center for Translational and Policy
Research on Personalized Medicine
What PCORI Wants
Kathryn A. Phillips PhD
Professor of Health Economics &
Health Services Research
Dept Clinical Pharmacy/IHPS/Cancer
Center, UCSF

2. Goo-Goos & Pinky-Ringers?

4. Today’s Conversation
• What is PCORI funding and why
• What are challenges & opportunities
now and in the future

5. Winner #1: David Thom
• Health Coaches: Health Team Support for Patient
Informed Decision Making
• Why Successful?
– Joined academic research w/ stakeholder involvement
• Questions & Challenges?
– How to create meaningful collaboration w/
stakeholders who are not familiar with research
process?
– How will collaboration change research process,
results, & dissemination/application of research?

6. Winner #2: Diane Allen
• Disability & Rehabilitation: Mind the Gap—
Targeting Differences in Patients’ Current and
Preferred Abilities
• Why Successful?
– Focused on patient-reported outcomes, when
relevant to patient
• Questions & Challenges?
– What is this institute and what influence will it have in
health care research moving forward?

7. Awards
National Pharmaceutical Council
<info@npcnow.org>

9. And What Did NOT Get Funded
• Objective is to advance observational data
approaches for reflecting patient variability
and subpopulations
– YES: Engaging stakeholders in how to best use
health plan data; topics of interest
– NO: Use of health plan data not innovative
enough; methods not sufficiently detailed; (health
plans not a focus of PCORI)

10. Others Not Funded
• #1: Problem not important enough –
population too small
• May not change practice – little room for
patient preferences to change decisions
• #2: A study of how to improve policy
decisions did not include patients as
stakeholders (now policymakers considered
stakeholders?)
• Methods insufficient

11. What Does PCORI Want?
• Expect to commit $355 million in 2013
• Funding
– Pilots (awarded)
– Five priority areas
– Topic specific areas (early 2013)
– Contracts
– “Challenge”
• Cash awards for prototype of
patient/researcher matching system

12. 1. Prevention, dx, tx
2. Healthcare systems
3. Communication & dissemination
4. Disparities
5. Methods

13. AHRQ Grants (2013)
• Patient-Generated Health Outcomes Data and Clinical Decision
Support Using Smart Device Technology
• Enhancing Comparative Effectiveness Research (CER) Data Resources
• Institutional Mentored Career Development Award Program in PCOR.
• Researcher Training and Workforce Development in Methods and
Standards for Conducting Patient-Centered Health Outcomes
Research Studies
• Individual Mentored Career Development Award Program in PCOR
• Electronic Data Methods (EDM) Forum: Phase II
• Bringing Evidence to Stakeholders for Translation (BEST) to Primary
Care
• Disseminating Patient Centered Outcomes Research to Improve
Healthcare Delivery Systems
• Deliberative Approaches for Patient Involvement in Implementing
Evidence-Based Health Care
•

14. Methodology RFA
• Patient‐centeredness
• Systematic reviews
• Inclusion of stakeholders: topics, peer-
review
• Methods for CER
• Data sources
• Reproducibility
• Training in PCOR methods

15. Challenges & Opportunities
• Real world evidence
• Incorporating stakeholder perspectives
• Focus on patient heterogeneity
• Prohibited from using “cost per QALY as
threshold”
• Evolving landscape
• Speed up review process?
• Stakeholder burnout
• Fiscal situation

16. Understand the Culture
• Goo- goos – good government – CER
needed to ensure value
• Pinky-ringers – political realists –
“where’s mine?”
• PCORI is compromise – independent,
non-profit, no yearly Congressional
appropriation (until 2019)
– No longer “CER” and no mention of costs

17. There’s a wonderful rule of thumb
for American health care:
Shift happens
Uwe Reinhardt