What PCORI Wants

Kathryn A. Phillips PhDProfessor of Health Economics & Health

Services ResearchDept Clinical Pharmacy/IHPS/Cancer

Center, UCSF

The Center for Translational and Policy Research on Personalized Medicine

Goo-Goos & Pinky-Ringers?

Today’s Conversation

• What is PCORI funding and why

• What are challenges & opportunities now and in the future

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?

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?

- 25 awards, $41M (>$1M each)

Awards

National Pharmaceutical Council <info@npcnow.org>

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)

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

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

1. Prevention, dx, tx2. Healthcare systems3. Communication & dissemination4. Disparities5. Methods

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 •

Methodology RFA

• Patient centeredness‐• Systematic reviews• Inclusion of stakeholders: topics, peer-

review• Methods for CER• Data sources• Reproducibility• Training in PCOR methods

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

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

There’s a wonderful rule of thumb for American health care:

Shift happens

Uwe Reinhardt